Cancer Hindsights: Caring For Hal

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2020-01-01T16:01:00.000-08:00

Chapter one part one 'The genie Flies Out Of The Bottle'

chapter 15: part 3

2007-10-26T10:29:00.000-07:00

continued from chapter 15: part 2

Steven and Diana deliberately held off their visit until everyone else had left, so that I wouldn't be alone just yet. They helped me buy two Himalayan cats that Hal and I always planned to get when Hephzibah finally died. Karuna and Shama are good companions; they sleep on the bed with me and they give me a reason to structure my days. They need feeding and that long hair needs constant brushing.

On a cold, rainy Sunday, we took Hal's ashes to a public place in Toronto that meant a great deal to him. He loved that city so much. We were very circumspect and no one knew what we were doing. I recall the crematorium man told Mike that Hal was now environmentally friendly. Yeah, that too. Now we were littering. Jason and Crista, my eldest grandchildren made me so proud. Each one reached in the bag and took a handful of ashes and scattered them.

The pain lessens but you never get over it. Not if you built something lasting.

I have gone through a lot of the "firsts." Our thirty-eighth wedding anniversary was a week after he died, there was his birthday, Christmas, my birthday, Valentines day.

I settled down to write this book. I've stopped sleeping with Hal's sweater in my arms, but I am surrounded by his photos. He had trouble leaving me and I felt his presence for six weeks after his death. I finally mustered the courage to ask him to go because I couldn’t get on with the rest of my life if I felt him close by. I don't feel his presence any more although the children sometimes do; he is on his new life and I am on mine, like it or not.

For six months after Hal’s death, Mark drove into the city every Saturday to visit with me and do any odd jobs. We’d sit and drink tea together and talk, talk, talk about that incredible year.

I don't see our married friends often; sometimes they'll invite me to dinner but I'm always the only guest. I remember one friend looking at me as though I were a stranger and said, “What are we going to do with you now?” I was now a single person. They just don't know how to handle an "odd" person.

All through my life, up to Hal's illness, I'd wake at night feeling fearful about the what-if's. I'm changed now. It's as though my worst fears have been realized and there is nothing left to fear.

I pulled together my own support network of friends who were widowed before me and they have always been there to help me through the rougher spots.

I have only one regret. I never asked Hal, "Are you afraid?" He never said and he didn't seem afraid, just terribly sad.
For years, he used to say to me, “You know, it really would be best if you died before me. I don’t know how you would manage on your own.” He was right. The woman he married depended on him a great deal, mostly because I sensed he wanted to be leaned on. I found quite quickly that I could manage on my own, without pestering friends and children to make decisions for me.

Hal sent me one last love message. Diana, who lives in Medicine Hat, sat at her desk on the morning of Valentines Day and she got a sharp inner message, “ CALL HAL.” "The only Hal I know is our Hal and that can't be," she thought. She went into a deep contemplation and asked inside herself if Hal had a message for her. "Please tell Patsy I love her and send her some white orchids," was the strong message she got. She and Steve immediately arranged to have the flowers sent to me.
I have grown orchids for years, not too successfully, but all of them were gifts from Hal, something Diana didn't know.

In the past, whenever I am missing a subtle message I should be sensing ,there will be a quick, powerful thunder and lightning storm and I’ve learned to stop and pay attention. The florist arrived minutes after the storm passed overhead.
Without that nudge, I would have been touched by the flowers but wouldn’t have made the connection. I called Diana and she told me of her experience.

The last thing we did at night we'd hold hands while we fell asleep.

Wherever you are Hal, I still feel your hand in mine.

The end.

chapter 15: part 2

2007-10-25T03:51:00.000-07:00

continued from Chapter 15: part 1

The day after Hal's death, my brother Doug called me to say that Dad had died that morning.
The kids made macabre jokes about their mom, “Typhoid Patsy.” First I have the cat put down. Then Hal dies. Now my dad.

Scott and Peter flew in two days later. They had been out of the loop all these months and they struggled to handle their feelings and cope with our need to talk incessantly about the past months. Melissa had picked up the baby and camped in with me as well as Mike and Lorrie. Mark slept at home but ran back and forth.

We were holding Hal's party on Labor Day weekend and I tried to find a caterer but no one was available on such short notice. I planned the food, shopped for it and prepared most of it. The kids did everything I asked them to do, getting the liquor, renting extra china, and working out the logistics of parking.

The day of the party, we all put on our festive things and so many people came. It was mostly writers’ shop- talk, which is the way I wanted it to be. I remember the men wore suits, and I wasn't used to them dressing so formally.
I had to force back the anger when someone asked to smoke in the house but eventually resigned myself to the fact that they would. They won’t understand. The girls did the hostess duties and I remained quietly in the living room.

I did what had to be done and kept feeling stabbing pains of grief but the tears never came for long. The boys played continuous tapes of Hal's favorite jazz and some of those tunes tore at my heart.

I was near the kitchen window when one friend said, "Hal would have loved this party," and I replied, "Perhaps he is, he's out there in the driveway in Mike's car." She handled that nicely.

That night, when only family remained I pulled out all of Hal's clothes and distributed them to the boys. No one would take his beloved corduroy pants, which he had specially made. I kept his wallet and the leather change pouch we bought in Florence.

This is when death becomes reality--when the possessions are given away and there is vacant closet space, drawers are empty and soon even scraps of his handwriting disappear.

to be concluded in chapter 15: part 3

chapter 15: part 1

2007-10-23T08:54:00.000-07:00

continued from chapter 14; part 11

I stepped out of the hospital into a new life.

The parking lot attendant who greeted me so cheerfully earlier that morning took my money and I pulled out into traffic on the way to Mike and Lorrie's apartment. A driver pulled illegally in front of me and must have been startled by the vehemence of my horn honking. I wasn't going to give an inch. Not then.

We gathered at Mike's place and immediately sat down to make the necessary phone calls. Mark and Mike shared the phone list while the rest of us sat there and listened. It isn't real, but you have to listen.

Mike called the funeral home, the one arranged by the memorial society years before and set up a meeting there in early afternoon.

The boys brought back food from a local hamburger house and we devoured double hamburgers and milkshakes. I eat in moments of crisis, which I mentioned before.

I didn't cry. Occasionally my voice would crack, and then I would get control. I couldn’t manage a shuddering, all-encompassing let-it-all-out cry for several weeks.

I'm alone, I kept thinking; my children are here and they are loving and wonderful but I am alone.
And I’m terrified.

I drove us to the funeral home and Mike and Lorrie went inside to arrange for cremation. I couldn't go inside. I find no comfort in what happens in funeral homes and accompanying coffins and I wasn’t having that for my Hal. As I sat outside in the car I hoped with all my heart that his body was there and not in the hospital. I wanted that poor wasted wonderful body to be transformed into particles as soon as possible.

I idly watched the busy traffic on St. Clair Avenue. A dark blue van passed, then slowed down and U-turned into the parking lot. He drive alongside my car.

"Your headlights are on", he said. And he was gone. I read messages into a lot of things and I took this as a good omen.

Back at Mike's place we worked out a funeral notice. I had become a consistent obituary reader over the past months and was very clear about what I wanted to say about Hal. We wrote that he fought his cancer like hell, and apparently that isn't acceptable for funeral notices.

This is the way it read:

TENNANT,HAL. Of cancer, on the 28th of August at age 61. Loved by Pat, Mark and Olga, Scott and Jannett, Steven and Diana, Peter and Meg, Michael and Lorrie, Melissa and David, and seven grandchildren. He left no enemies, he fought his cancer with all he had and his mind didn't give an inch. No funeral. Cremation. Friends are invited to a final party for Hal at 64 Pioneer Pathway, Scarborough on Saturday, September 2nd from 2-5 p.m. A professional to the last; every deadline met, all words in place.

I purposely did not mention that in lieu of flowers people should send money to some charity. I hoped one or two would send flowers and many did. We did leave discreet written messages near the sign-in table at home so that if people wished they could send money to the self- help group that was such a comfort to me. I was irrationally angry when people sent donations in Hal’s name to the Cancer Society. After all, why couldn’t they have found a way to save him?

continued in chapter 15, part 2

chapter 14; part 11

2007-10-22T09:34:00.000-07:00

continued from chapter 14: part 10

The next morning, I got out of bed around six as the sun was rising. I stood at the window and watched the red sky.

"Red sky in the morning," I whispered softly.

I quickly showered and washed my hair and while it was drying I put on the kettle and sat glancing thought the paper. I'll be at the hospital by nine, I thought.

The phone rang. It was quarter to seven. It was Doctor Walter, the resident to tell me that Hal had just died.

I remember asking if he suffered and I don't remember much about what he said but I knew in my heart we had needed one more day to make his dying easier.

I called the children and they all made arrangements to meet me at the hospital.

When I entered the building that last morning my eye was irresistibly drawn to that corridor where the death cart was kept and I saw that it was missing.

Oh god, I thought, I don't want to see it outside his door.

It wasn't near the door and I never saw it while I was there, and for that I thank them. They wouldn't have known that I knew what it looked like but I did.

Doctor Walter happened to be standing by the elevator when I arrived on the ninth floor and he walked me to Hal's room. I feel frightened, I thought. I am afraid of seeing that dead body. He opened the door and the curtain sheltered the bed from view.

Melissa was sitting by the bedside and she swiftly came to me and put her arms around me. The doctor quietly withdrew. Then I looked at the bed.

The stillness, oh that stillness. The life color was missing and his skin was a yellowish shade. His mouth was open and his head was tilted up to his right, I could see that his chest was fully expanded. The needles had been removed from his arm and I was relieved at that.

"Oh Hal, oh my darling Hal, my darling Hal," I kept repeating as Melissa held me.

Then I moved away and sat beside the bed.

"I had to touch him just to be sure, " she said.

"I don't want to touch him; I want to remember his warmth."

We sat beside the bed waiting for the children. A couple of nurses came in and were sweetly gentle. His wedding ring and his watch were on the bedside table and his other possessions had been bundled into plastic bags. The lovely pot of yellow chrysanthemums our friend Bonnie had sent two days before had died with him. They had been lusty the night before.

This had been his final gift to me- he wouldn’t let me see him die.

After the children came, Mike went over to the bed and stroked Hal's hair. When the time seemed right, we prepared to leave. As we walked toward the door, I stopped and my throat caught.

"Oh, I'll never see him again."

I returned for one more look.

"Now you wait for me," I said and then joined the children at the door.

I was a widow.
continued in chapter 15: part 1

chapter 14: part 10

2007-10-19T07:22:00.000-07:00

continued from chapter 14: part 9

On the way home from the hospital that night, I went over and over in my mind what was happening. Hal was going to suffocate to death; he had suffered so much and I couldn't bear for him to go through any more. I was reminded of a "friend," a former nurse who assured me, early on, that when things got tough she'd be there to advise me. She disappeared from sight long before the tough times.

As soon as I got home I raced to the phone and called Alice. Alice is a writer, a first class researcher and a person who comes through in the crunch.

"Alice, I need help."

I quickly described what had been happening to Hal and then said,

"I want to end Hal's life; I don't want him to suffer anymore. He's dying but he doesn't deserve this kind of death."

Alice said without hesitation,

"Okay, I'm going to start making some enquiries. You just sit tight and don't do anything until you hear from me and I promise to get back to you by tomorrow morning at the latest."

She called later that night.

"I have the information you need and I want you to come by my house tomorrow morning on the way to the hospital."

I agreed to this and said I would bring son Michael along.

We arrived around nine o'clock. She moved to put her arms around me and I drew back.

"Alice, I can hang together as long as nobody is too nice to me, so please don't hug me. I appreciate your concern."

She sat us down.

"Look, I know what you want to do is a tremendous display of love but I can't let you do it. I talked to a couple of doctor friends and others who have gone this route and the fact is that it's too difficult to do in a hospital. If there was time to get him home then you could. You will end up sitting in a jail cell and while you don't care now there will be a time when it will matter.
Now there is an alternative. Have all treatments been stopped?"

"Well, no, they're giving him Ventalin through an oxygen mask two or three times a day and it terrifies him."

"Stop that immediately. Anything that sounds like ventilation is just going to prolong his suffering. What else?"

"They seem to have stopped drawing blood, but he has been getting his morphine by pill until yesterday when he asked them not to expect him to swallow anything more, so they've switched back to the liquid."

"Okay, when you get to the hospital, ask to see the doctor privately and make all arrangements to keep him sedated and comfortable. Make sure all treatment is stopped. And don't try anything else."

I trusted her completely and somehow she persuaded me that this was the right course to take.

We arrived at the hospital to find Hal looking peaceful and alert. He'd slept well but he was lying slightly propped up and wasn't about to get out of bed.

When Hal napped, we stole out of the room and searched out the resident, Doctor Walters, who was on call that day. We asked for a private place to meet and he took us to a nearby office. We then sorted through our misunderstandings, that no, we didn't want anymore ventalin treatment, we wanted Hal to go on steady morphine drip, that we had said everything we needed to say to one another and we wanted him to be as unaware as possible when he died.

I asked,

"From what I saw yesterday, he's going to suffocate, isn't he?"
His answer was simple. "Yes."

When we returned to the room, Hal was getting the ventalin treatment and he gave me a desperate, fearful look. The nurse was soon behind me and she immediately removed the mask.

"Mister Tennant, " she shouted, "You're not going to have anymore of these treatments. This was your last."

He looked so relieved.

I was holding his hand and he said,

"What happened?" He was referring to yesterday and the breathing problems.

I looked up at Mike before I replied, "It's in both your lungs, sweetheart."

He nodded. He slept briefly and when he awoke, he tenderly reached over and removed my hand from his. He seemed to know the rest of the journey was his alone.

Mike stayed for a while longer, then left for home and we arranged that when I got Hal settled for sleep I would come over for dinner.

It had been a loving, peaceful day.

In the late afternoon, Hal sat up and watched an entire tennis match on television. I remember that Martina Natilova won. He got down some orange sherbet.

The nurse wheeled in the infusion cart, a computerised mechanism that metes out the various drips into the main intravenous tube.

Hal looked confused.

"What's that? Are they going to put a tube back down my throat?"

"No, no darling; remember? This is the infusion box; you asked yesterday that they not give you any more pills so they are going to give you your morphine by drip. That's all."

Two nurses came in to settle him for the night just as I was struggling to lift him toward the head of the bed. I don't know what it is, but they always tend to slide down until their feet are pressing uncomfortably on the foot board. They gently shifted him up and arranged his pillows for maximum comfort, tucked in around on the side so that he could ease into them. His breathing was shallow but he appeared calm.

I remember thinking, how wonderful it will be to go to Mike and Lorries' place and just relax for a bit. I hope he falls asleep quickly.

When the nurses left the room, his began became rapid and shallow and I took his hand and kissed him.

"I'll stay with you until you're fast asleep, so don't you worry."

He looked relieved and closed his eyes. He fell asleep almost immediately.

Quietly, I gathered my things and crept from the room. The nurse hurried toward me.

"Look, you've spent long hours here every day, and I think you should go home and get some rest, but if one of the children wants to spend the night that will be fine. We're trying hard to keep the other bed free for your privacy."

I thanked her but told her the children were pretty tired too, but I would pass on the message.

I remember feeling anxious to leave I must have been emotionally and physically exhausted.the hospital that night. I would spend a couple of hours with Mike and Lorrie and have everyday conversation and relax a bit and then I'd go home.
continued in chapter 14: part 11

chapter 14: part 9

2007-10-18T07:08:00.000-07:00

continued from chapter 14: part 8

Hal settled into an exhausted sleep, still gasping, and without taking my eyes off him, I asked the nurse to call the children.

Melissa came first. Her boss swiftly called for a taxi and waited with her until it came. I told her softly what had happened and we sat by the bedside, watching him take a shallow breath, then a long pause and another breath. Michael and Lorrie arrived and we filled them in. We were hypnotized by his breathing. Then Mark arrived. He had mostly stayed away from the hospital but I knew how much he cared because of the fearful way he asked for news by phone. He took one look at Hal, me propping up his head, the nose prongs and the sound of the oxygen and he burst into ragged tears. Melissa rushed over to him and he quickly controlled himself.

I was frightened and confused; I said to them,

"I don't know what to expect. I don't know what we should do".

We looked at one another and shared confusion about this role we were thrust in.

Hal opened his eyes and looked from face to face. He smiled and managed to gasp out,

"If you think you're keeping a vigil, forget it."

Later, he woke and spotted Mark. He smiled.

"Every time I open my eyes, the room is more crowded."

Around mid- afternoon, he opened his eyes and said, panting,

"I feel that it's over."

Oh lord, I thought, I must say just the right thing now.

"What is, dear?"

"My illness."

"How does that feel?"

"It feels great."

Later, we interpreted his reply in different ways. Mike and Mark thought he was saying he knew he was dying, but Melissa and I, who had seen so much, both believed he felt he had reached a turning point and was going to recover.

The rest of the day seemed, in retrospect, like a Gothic cartoon. His breathing was ragged, His hair looked lank and untended, but the last few days he had stopped requesting that I help him to the shower or shampoo his hair and settled for spotty bed baths.

There must have been a sea of liquid in him because we felt like the fire brigade slipping the little jug-like container under the covers, then emptying it and almost immediately starting all over again.

You can eventually get used to any situation and I pulled my daily egg sandwich out of my purse. Melissa and I shared that and the boys went out to bring back hamburgers and drinks. We broke out the morning paper and read interesting snippets to one another. It was as though we were sitting around the kitchen table on a normal day.

David had been bringing the baby to the office each day for Melissa to nurse her; today she remembered to bring the breast pump with her, and retired behind the curtains to express milk, while we listened to the humming sound with interest.

Every so often the girls walked up and down the corridor with me.

"I don't know how to express this," I said, "But this is so much a part of life it's impossible to separate the two."

The nurses spoke to us in hushed whispers and told us they would give us as much privacy as possible. We were all surprised when in mid afternoon, Hal was awake and saying a few words. The attendant brought in his dinner tray and he began to sit up.

We were astonished.

"You want some dinner?"

Nod.

We were all exhausted. I looked at the weary faces around me.

"In that case, you kids go home; I'll stay until he's settled for the night."

He ate a little sherbet, watched some television and behaved as though it was just another night. Then he settled down and I stayed until I knew he was soundly asleep.

The next day, Saturday, he was feeling fit enough to sit in a chair for a while the children came and sat quietly with him for several hours. Melissa came in with the baby Hallie, his namesake, and he gave them a loving smile.

Again, when dinner was brought in, sherbet and liquid nutritional supplement, I sent them home and I stayed longer. This time, when the nurse settled him for sleep, his breathing was jerky and he looked perturbed. I sensed he was frightened.

"Now, don't worry, I'm staying with you until you fall asleep."

He nodded and closed his eyes and I stayed close to him until I could see he was deeply asleep.

continued in chapter 14: part 10

chapter 14: part 8

2007-10-17T03:59:00.001-07:00

continued from chapter 14: part 7

The next morning I stopped a nurse in the hall.

"Please tell the doctor that Hal does not want to be resuscitated. He made the decision last night. But, please also tell the doctors that he intends to keep fighting and they must not talk to him as though there's no hope."

That simple message snowballed into an enormous misunderstanding that didn't get sorted out until it was almost too late. The doctors took this message as a signal that all treatment and tests should be continued, although they understood the "do not resuscitate" message.

The next day, Friday morning I arrived when a couple of nurses were making up the bed and Hal was down in ex-ray having his lungs ex-rayed.

"They're doing what?"

No, they didn't know why the doctor had ordered this but they were friendly and chatty and I blurted,

"Do you think he knows he's dying?"

Then I burst into tears. For a woman who prided herself in being self- contained I was definitely coming unglued. They put their arms around me and the consensus was he did know but would not say so.

We were interrupted by the arrival of a worried porter who was returning Hal to the room. Hal was in obvious respiratory distress and he was hurriedly placed on the bed and propped into a sitting position. His lungs expanded but wouldn't close and he was croaking for air. The nurses calmly worked with him and one put in a call for a doctor.

The resident who took the call first rushed down to ex-ray to take a quick look at the plates. He dashed into the room and by that time Hal was beginning to take in some air. The doctor listened to his chest and motioned me out of the room. He sounded distressed.

"This is very bad. The ex-rays show his lungs are riddled. This must have happened in the last couple of weeks."

"Put him under," I implored.

He misunderstood thinking I meant I wanted him to end Hal’s life.
“I can’t do that- they’d pull my license in a minute.”

"No, I want him to be sedated," I explained. "Is there fluid in his lungs?"

"I don't think so but I'll give him something in case there is."

He injected something for that and gave him more morphine and Hal settled into a fitful breathing pattern, exhausted.

I stood by the bed, holding his hand, staying out of everyone's way and quietly sobbing. Hal opened his eyes and gasped,

"Don't cry, dear; I'm going to make it."

I truly think he believed that.

continued in chapter 14: part 9

chapter 14: part 7

2007-10-16T07:34:00.000-07:00

continued from chapter 14: part 6

The next morning I arrived at the hospital to find Hal sitting up in bed looking alert. He announced he had drawn up a chart of his major health problems and had confronted the resident with them that morning. They had gone over each item and Hal said indignantly the doctor's chief response was,

"Well, I don't know that we can do anything."

As it turned out, the man compassionately listened and acted on each item.

On the list were weak muscles, ragged breathing, bed sore, morale (he added this one twice), the need to eat solids, pain in upper and lower abdomen.

In the OBJECTIVE column he had written beside "weak muscles," " get out of bed more to relieve leg cramps," and he acted on this by walking to the bathroom and getting up and moving to the chair at the foot of his bed for meals.

The doctor responded to the "Breathing" column by sending in a chest physiotherapist that afternoon; she introduced herself and gave Hal a couple of simple breathing exercises to do.
When he breathed there was a crackling sound from his chest, like the sound of crumpling cellophane.
She tried gently tapping his chest but he found that too painful for her to continue. She was kind and sensitive and did wonders for his morale.

For "Bed Sores", he had one at his tailbone. The bone was literally pushing through the skin because all his muscle tissue was wasted. The doctors had already sealed off the area with bandage and tape and he was never completely comfortable because of the tightness of the bandage. The nurses brought him a sheepskin pad to lie on, to relieve the pressure and later, an egg-crate mattress.

He ate more solids, continued with morphine for the pain, now in capsule form and he took a sleeping pill at night.

Beside "Morale", he wrote "Adopt strict program with structure." And he did.

That hand-written chart is one of my most cherished possessions.

When I helped him into the bathroom he slowly pushed his intravenous pole in front of him and his flapping hospital gown revealed a body completely wasted, his once adorable tush hanging in loose skin folds.

continued in chapter 14: part 8

chapter 14; part 6

2007-10-15T07:16:00.000-07:00

continued from chapter 14; part 5

The doctors came by around two o'clock that afternoon and for the first time they behaved like lunatics; they shouted at Hal as though he had just lost his hearing, and said inane things like,

"Oh, you were sleeping were you, Mr. Tennant? Good, you get all the sleep you can."

Hal eyed them warily and interrupted the shouting match to ask some brisk questions about treatment he felt he required and they agreed to it.

Then, still in the loud voices, moving their lips to be distinct,

"Now you get all the sleep you want. We won't disturb you if you want to sleep."

What was going on?

As they turned to leave, Doctor Beam motioned with his head for me to follow him out of the room.

In the hall, he sent the residents away and then he said,

"Do you know what's going on?"

I wasn't sure what that question meant and while I tried to frame a reply, he said,

"He's dying, your husband is now dying; you seem to be pretty tuned in to what's happening. What we want to do now is keep him as comfortable as we can. We'll stop all tests."

I knew, I'd known for so long, but we'd never talked about it before, the doctor and I. I wept quietly and we talked a bit. I told him my parents were both dying, the cat had been euthanized that morning and here I was, at my age, about to become an orphan and a widow and the family pet would be gone as well. That was a ludicrous statement and we both laughed a little over that.

He offered me sedatives and I heatedly replied,

"No, no I can't do that; I need to be clear headed if I'm called back at night. I want to be here for him."

He said, "There's one other thing; I need to know what your husband feels about resuscitation should his heart fail. We're legally obliged to try to revive him unless he states otherwise."

"Oh, you mean DNR; I know he'd never want that, please give the order not to resuscitate."

"Well, it's not that simple; he must make the decision. It's okay if you ask him and pass on the message or I can go in and ask him now if you like."

No, that should come from me. I'll leave a message with the nurse after we discuss it."

I returned to the room and Hal immediately asked what we had been talking about. I took his hand.

"Honey, you've had some close calls lately and the doctor wants to know what you want done if your heart gives out. Do you want to be resuscitated? We talked about the possibility of his brain being deprived of oxygen and finally Hal said,

"Well, if my heart fails, then let me go."

"If this does happen, what kind of a send-off do you want?"

"Well, I'd like some kind of a gathering of friends, eating and drinking and telling nice things about me--if you think anyone would come."

He was so tender and so serious. I joked that I'd try to rustle up one or two people.

While I sat by the bed waiting for him to fall asleep, I thought about what the doctor said and also about his strange behavior at the bedside. He's unsure of death, I thought. He works with death all the time and he doesn't know how to deal with it. Some of the nurses have begun shouting also. They seemed to know intellectually he was beginning his journey but they seemed to think his hearing left in advance.

When Hal fell asleep, I sat and watched over him for a while. Then, I pulled a notebook out of my purse and began jotting down names of people who would have to be told, when he died. When that was done, I got up and emptied out his storage locker; I bundled up his clothes and his shoes and took them all home. I had turned into an efficient zombie—there was no feeling left in me.

continued in chapter 14; part 7

Chapter 14: part 5

2007-10-05T07:48:00.001-07:00

continued from chapter 14: part 4

Hal was in pain and the doctors thought the bowel might be kinked and inserted a GI tube and took him off food for a couple of days.

In his third week there he woke from a nap gasping for air and the doctors ordered oxygen on an ongoing basis.

Hal always made it clear to the doctors that he wanted to fight on. The doctors stood by his bedside each day and discussed what else they might do. They had to get the pain under control but they didn't dare return to the site of the previous two operations. They had done palliative surgery the last time and that was it. Still, the pain was intense and Hal was struggling for some answers and relief. They were in a quandry knowing that Hal wouldn't quit and there wasn't much more they could do.

The pain wasn't being controlled by medication and as a last resort the surgeon decided to do a percutaneous gastrostomy . This is the insertion of a tube directly through the skin into the stomach, and the intent was to draw out secretions and gases. There is a bag attached to the tube on the outside. The procedure is done in the X-ray department, so that the medic can see the direction the tube is going. Hal was in terrible pain that night after the procedure and the next day and then during the evening, the pain stopped and it was never unbearable again.

This procedure was done on Monday. By Wednesday he felt cheerful and was able to eat selectively, mostly yoghurt or sherbet. He feared eating anything more solid in case the pain returned.

On Thursday, he developed a temperature and blood infection, which was treated with blood transfusions and plasma.He had only a few days left.

That same Thursday morning after I left for the hospital, Lorrie came to the house and took Hepzabah, our twenty-year old cat, to the veterinarian to be euthanized. Hal didn't ask about her even though we had made the decision together the previous evening. She was deaf, blind and appeared to be in pain and she had been howling all night for weeks.

continued in chapter 14: part 6

chapter 14; part 4

2007-10-04T07:12:00.000-07:00

continued from chapter 13: part 3

Hal began his third series of chemo early in June and the morphine he was now taking sometimes left him with double vision. I took him to the hospital emergency a week later when his foot swelled and he had trouble walking. The emergency room doctor said nodes were pressing on the pelvic wall and he found signs of lumps in Hal's neck. He sent Hal home but urged me to take him to the adjacent cancer hospital as soon as possible so his doctor could see him. I did and the doctor-of-the-day at the clinic discounted the findings of the emergency doctor and declared the foot problem not serious and sent him home.

Two weeks later he was admitted to the cancer hospital diagnosed with deep vein thrombosis and both legs were now grossly swollen. He was treated with blood thinners and discharged a week later.

Two weeks after that, in mid July, he was admitted to the general hospital through emergency, suffering vomiting and severe pain. There were signs of a partial blockage and doctors felt another operation would be too dangerous and they tried other methods. He was taken off food for a few days and then he slowly started back, on fluids and then solids. He was discharged after four days.

At home, almost immediately we both knew he wasn't progressing and that he was in big trouble. He was weak and vomiting and his poor legs were swollen and uncomfortable.

One morning I dashed downstairs to tidy up the family room and he called to me from the top of the stairs.

"Patsy, can you be with me?"

I ran upstairs and helped him back into bed and cradled him in my arms for hours. While I lay there holding him I remember thinking, this is what a broken heart feels like.

He was readmitted to hospital four days later, on July 25, and he never left after that.

continued in chapter 14: part 5

chapter 14: part 3

2007-10-03T04:15:00.000-07:00

continued from chapter 14: part 2

Each day I felt more helpless and confused and finally I arranged a meeting with the oncologist at the hospital and the doctor managed to work me in on what should have been his lunch break. I described what was happening and the man was wonderful.
He winced when I told him that a resident had casually mentioned that the cancer had metastasised further into one lung, that Hal was wearing a binder for the surgically caused hernia and it was uncomfortable and he was exhausted about 80% of the day. There was a burning sensation in his lower abdomen and he felt a constant bloating, "As if something is expanding with no place to go." He was afraid to eat because pain might result.

The doctor heard me out, taking notes as I spoke and then gave me suggestions about making him more comfortable and urged me not to allow him to spend the day in bed because moving around was beneficial.

I took a deep breath and said, "Hal has never wanted to discuss the possibility that he might die of this. But I want to know-how much time has he got?"

"No more than a year."

In my heart I knew his estimate was optimistic because, after the recent by-pass surgery, that little inner voice had clicked on with the message, "Six months." That little voice was right.

I returned home feeling so much better. It may sound peculiar to return from hearing continuing bad news. Instead, I concentrated on the positive things we'd discussed. Hal said I looked much younger when I got home and I immediately set about to get him up on his feet.

A couple of days later I received an extraordinary phone call. A woman asked for Hal and I said he couldn't come to the phone. She explained she was hoping to become a writer and had the material for a book and heard that Hal might be the person to ghost writes it for her. I explained then that Hal was ill with cancer and rather busy dealing with his illness.

"Well, this is such a coincidence, because my book is an expose of the medical profession and my doctor's bungling may have just ensured that I will get cancer some day."

I murmured something non-committal.

Her mind was really clicking by this time and she continued, "Tell me, do you think Hal will die soon?"

Yes, that is what she asked. Could he possibly live long enough to write her terribly important book? I hung up the phone as he walked into the room. I broke into sobs as I repeated the call to him and he held me in his arms and comforted me.

Later Steven told me that when they were speaking on the phone shortly after, Hal told him about the call and cried out of sorrow that I should have to go through that. Imagine, he was crying for me.

continued in chapter 14: part 4

chapter 14: part 2

2007-10-02T08:43:00.000-07:00

continued from Chapter 14: part 1

I had read that couples benefit from sharing the dying stage, and was open to talk with Hal always. But no matter what, he evaded the subject. I wasn't alone. Of the four women I spoke to after our husbands had died, each one had the same experience. Our men refused to discuss the fact that they were dying.

Rachael said that Evan had been raised to treat everything in a positive manner and to him dying was a negative. When she raised the subject he'd cut her off with,

“What do you mean, I'm not dead yet. You're not supposed to think like that."

Ever since early summer, Hal's eyes contained a heartbreaking sadness. They seemed to be looking somewhere I couldn't follow; they were seeing something much deeper than I could see.

There had been many changes since Christmas. He suffered pain which was controlled at first by codeine, then later by morphine. He got frequent chills. In February he began a round of chemotherapy; daily fifteen minute injections for five days. There was to be a follow up in a month's time, but then his operation site was blocked again and instead he had palliative surgery to by-pass the site. The doctor told me he could feel a mass but didn't dare touch it.

He began a second round of chemo about four weeks later. By then, late April, he had been in almost constant discomfort, his abdomen made loud squeaking sounds and he vomited frequently, often three times a day. My objectivity was taking a nose-dive, because it was clearly the time to discontinue the debilitating and useless chemotherapy. What option did the doctors have? Hal kept insisting that he wanted to fight on and unless I stepped in, what could they do?

In May, I took him to Doctor Beam the surgeon, because I noticed a pink rash-like stain on his abdomen. It was a cyst at the surgical site and it had to be lanced and drained with follow- up at home for a week, with visiting nurses.

After that cleared, he started hiccuping violently, lasting for days, up to ten minutes at a time and ten minutes apart, requiring strong medication to stop that. He was exhausted.

continued in chapter 14; part 3

chapter 14 part 1 Winding Down

2007-10-01T07:05:00.000-07:00

continued from chapter 13:part5

Excerpt from my diary: June
He’s slowly slipping away from me. He’s so brave and so thin. His smile stretches over his teeth, much like a skull.
Before the last (third) series of chemo three weeks ago, the doctor said there was a significant shrinkage of tumors and was so pleased. That was the same week Hal had to switch to morphine to control the pain.
I panic at the very thought of living without him, but in a sense, that is already happening.
We have some joyful moments, but he is so weak. We did manage a walk to the plaza a couple of days ago and that was a triumph. I had to dash into a store to buy some apple juice—he gets parched, presumably from the drugs. He also wakes up at night drenched with sweat and then he begins shivering.
He weighs 137 pounds now, down from the high 170's.
it's hard to believe I will ever feel lightness or joy again.

It's impossible to separate life from death; one flows from the other in an unbroken chain. I had never seen anyone I loved die and didn't know how to begin dealing with this incredible experience.
Yes, I knew Hal was dying; deep inside, I had known for several months. I was confused about what death meant, or what it entailed. When he was clearly terminal, I simply did not know what to expect or how to behave.

I'd heard tales of deathbed vigils lasting several days and I assumed that Hal would be lying quietly in his bed, surrounded by those of us who loved him so much. Then he would just peacefully fade. I took it for granted that I would know what to do and when to begin doing it.
I was wrong.

I really needed my imaginary interventionist to tap open the computer to check his files and say,

"Oh, yes, Hal; well, he is dying now because his body shows signs of thus and so. What you should consider is who you want to be with him, such as family and possibly some friends.
Then you begin to alert them so that someone is with him throughout the day and night. Think of it as taking shifts. You're confused because he is often so alert and speaks with you as though it's an ordinary time. But make your arrangements and if he refuses to discuss his imminent death then you'd better take pains not to make it look like a deathbed vigil."

That's what it would have taken to get my brain into gear.

continued in chapter 14; part 2

chapter 13; part 5

2007-09-29T07:14:00.000-07:00

continued from chapter 13: part 4

When Hal became ill I would have benefited from a counselling service for families who are confronted with cancer. You need to learn about available services, where to get a break financially if you need it, most important, how to manage pain, or, to put it simply, what you might expect. I never found that there was time for anyone to sit down with me in the hospital and I didn't find the social worker of much use.

I understand there is more available help now.

I corralled a compassionate nurse once and asked her to tell me what I might expect if Hal should die because of the cancer in his liver. She told me in a simple and straightforward manner, and I felt relief just to know.
I needed to know what I might expect. By the time he died, the tumors in his lungs actually shut him down.

If you have to travel from your own town for treatment or need a place to stay while your partner is hospitalized, there was,during Hal's illness a country-wide hotel chain that held rooms available for patients and families from out of town,arranged
through the cancer society.

Pain control is an option that I never investigated early in Hal's illness; I assumed the doctors would be knowledgeable about what kind of drugs and what dosage would keep Hal free from pain and keep his head clear.

We read a lot about the value of heroin-laced drinks and other narcotics that keep the patient pain -free and yet awake, but I'm not sure the message has reached
the entire medical profession.

Most hospitals now seem to have a pain management clinic, although I never heard of one when Hal was in his final stages and in a lot of pain.

Now is the time to ask questions. Ask your doctor for information about pain-
management, ask your visiting nurses. There may be a private service, a government service, a hospital service. You want to know what they would use for a cancer patient with your partner's symptoms, what they do and how they do it, and keep asking until you begin to understand a pattern from each of your sources. Keep that option in mind just in case. Don't just expect them to manage the pain, because they are not all experts, though they'd like to be.

Not all cancer patients die in pain and that's important to remember.

Dying with dignity didn't have a lot of meaning to me until I was confronted with death first hand. In Canada there is the Dying With Dignity society established by Gretta Riddell-Dixon, a professor of gerontology. The society was formed to inform and educate Canadians about "the right to a good death." They promote the idea of a living will, which would prevent further medical treatment if the case is hopeless or if further treatment simply prolongs suffering. There are many rights that each citizen has in regards to his body and his treatment and the society details
these options.

continued in chapter 14: part 1

chapter 13: part 4 OPTIONS

2007-09-27T07:17:00.000-07:00

continued from Chapter 13: part 3

Three of us caregivers in the support automatically stayed close together and each of us faced tough options.

Evan and Rachael faced their own different scenario; during his last few months, he was no longer able to work and he stayed home with regular visits from the visiting Nurse.

Rachael returned from work one day to find Evan profoundly depressed. It seems the nurse, when she had come by that day, had told him that since he was terminal he should pre-register at the nearby general hospital so that he'll be sure of a bed when he needs it. He wasn't prepared to hear that he was dying.

Eventually Rachael quietly signed him up for a palliative care ward, but when she went to look at it, she found that there were only four-bed wards, no private rooms, and she knew that he would want as much privacy as possible. He was that kind of person.
From what I've heard of palliative care, she would have been given all the privacy she needed.

When he was clearly dying, she managed to get him into a private hospital room. At night she slept on a sofa in the room and left for home around six thirty in the morning, to clean up and do any pressing business and then returned. The floor was noticeably short-staffed and she was fearful that he wouldn't get enough attention if she wasn't there for him. She wanted to be with him and she was, at the end.

My friend Berry brought Ronald home from the hospital and she managed with the help of her son, Don. The discharge planner was the only one who ever told her that Ron was terminal and the planner did mention a hospice group nearby who could come to the house and help out.
She chose to go it alone with Don's help. Ronald was free of pain and managed to exercise a bit each day.
Don moved in with them for the remaining months and with his help she managed.
He went to work each day but she knew relief was at hand in the evening.

The doctor stopped by regularly to keep an eye on things. She despaired at trying to keep Ronald propped up in bed instead of sliding down so that his feet were uncomfortable pressed against the foot board. She devised a good plan to combat this; she kicked off her shoes, stood on the bed straddling him, then she carefully gripped under his arms and at the count of three, pulled him up in place. Worked beautifully. in their pre-illness days, she was tiny and he was tall and skinny so it conjures quite a picture.

She and Don had a reward for getting through the day. First,they got as much liquid nutrient into Ron as they could, then they settled him for sleep. When he was thoroughly asleep, they would cook a splendid diner, preceded by a healthy drink and play some Vivaldi; the music and the good food eased the tension from them.

Ron's bedsores forced her to send him to hospital for his final days and she regrets that she couldn't hang in that little bit longer. But again that's hindsight. She was probably emotionally and physically depleted and in need of more help.

Each family has its own need, whether it is for a temporary condition that is expected to be cured or whether it is for a terminal patient. Don't ever feel that you are going through this alone. There are answers out there for you. Ask your doctor, or call a visiting nurse association or speak to the hospital discharge planner.

And take notes.

continued in chapter 13: part 5

chapter 13: part 3 OPTIONS

2007-09-26T06:57:00.000-07:00

continued from chapter 13: part 2

My friend Helen found out about Home Support quite by chance. She and her
children were clustered around Curt's hospital bed, and although he wasn't about to discuss the prospect that he might be dying, he indicated by subtle means that his time might be limited.

He said out loud, "Oh, I wish I could go home," just as the doctor walked in.

"Oh, honey, you know that isn't possible."

The doctor motioned her out into the hall.

"If you want to take Curt home, I can put you in the hands of people who will arrange it and it won't cost you. I'll see that you have all the support you need."

She felt a mixture of emotion. Yes, she dearly wanted him home so that he could die in the place he loved. Yet she was fearful because she had never seen death. She kept that emotion to herself and accepted the doctors offer of help.

They are the couple I mentioned before who lived in cottage country on a lake. It was arranged for a vising nurse to come in once a day, or more often, if it became necessary. A hospital bed was set up close the kitchen.

A Red Cross homemaker came once or twice a week to keep the house tidy. Helen learned she could even have had Meals on Wheels for herself and Curt but she declined this. She said he wasn't eating enough to justify it and she never thought of it in terms of herself, although she wasn't eating properly at all.

When she felt he was slipping away she arranged for a nurse to stay the night so that she could get some sleep, and this was the only expense for her. The government picked up half the cost.

Our country squabbles a lot about the cost of social Medicare but it is the only humane way.

Helen's one small regret was that despite the careful planning, Curt died quietly while she was in the next room.

"He was a private man," she said, "I think this was the way he wanted to go. He didn't call, there wasn't a sound."

continued in chapter 13:part 4

chapter 13: part 2 OPTIONS

2007-09-25T07:10:00.000-07:00

continued from chapter 13: part 1

When we were early into Hal's illness and covering all eventualities,we did discuss euthanasia.

We were walking hand in hand during an early evening neighborhood stroll and We were into the "what-if's," which seemed remote then. I asked him whether he would want to get in a stock of lethal medication in case he ever suffered unmanageable pain, with no hope of relief. He agreed that he did wish this and we made a few preliminary enquiries about how it could be done. Hal preferred tablets of some kind and he said he would write an undated letter to keep with him which would act as a suicide note to keep his helpers out of the reaches of the law.

We kept it in the back of our minds but it seemed to be less and less important
as we struggled for living time. I know now that Hal would never have asked for those pills and as you'll learn in the next chapter, it was fortunate that I didn't have them on hand.

I had always believed that if anyone I loved was dying I would bring him home to die. This isn't always practical or workable and in Hal's case, his pain wasn't under control until the very last few days. If he had asked to come home, I would have found a way to arrange that.

Although in my heart I knew Hal's cancer would result in death, my soul could not grasp the concept and throughout his illness I struggled to emotionally prepare for his death.

Nowadays you read of groups of friends banding together to provide round-the-clock support to a terminally ill friend wishing to be at home. There are visiting
nurse programs, you can get advice by calling the cancer society and you can also sit down with the social worker if one is assigned to your partner.

My two support group friends who managed to have at-home care, said their spouses were relatively free from pain and were not hooked up to an intravenous, and that may be why I didn't seriously pursue this notion.

That and the fact that Hal never asked.

continued in chapter 13: part 3

chapter 13: part 1 OPTIONS

2007-09-24T07:40:00.000-07:00

continued from chapter 12: part 6

Every step of the way through your cancer, you have options open to you; what treatment you'll follow, which doctor you'll have, combining treatment with a special diet or exercise or relaxation programs, and in some cases when to continue treatment, and so on. All through this book we've discussed options.

This chapter is mostly for the caregiver. It's about choices that will have to be made if things start to go wrong.

Hal struggled to prolong his life day by day. He had this option. He could have chosen to give up the struggle and passively accept whatever happened. His deteriorating health prompted more choices for us to make.

As I got further into writing this book, I realized that we were well informed, really. Doctors were honest with us but couched their information with tact so that we could handle the rough spots.

With my 20/20 hindsight, I realize that when Hal and I were freely talking about the possibility of his dying, we virtually stopped there-- at the possibility that he might die. That was such a staggering concept that I never thought to take it a step further.

That was the ideal time to ask him whether he wanted a funeral, what kind, who to ask, whether he wanted cremation, where to scatter the ashes. In the early stages, when everything is unexplored territory, is the time to discuss death plans. Once the fight for life begins, the chance is lost.

We had been prudent enough to sign up with the Memorial Society years before and with my mania for orderly planning, I wrote a letter detailing how I wanted my body disposed of and the kind of send- off I'd like. Hal agreed that the letter was a good idea but never did this.

His mother, unbeknown to us, had made her arrangements through the Memorial Society and when she died at the age of ninety-five, our choices were so simple. She did ask for a funeral in the church, not a memorial service, but we fudged a little and didn't bring the coffin to the church.

continued in chapter 13: part 2

chapter 12:part 6

2007-09-21T06:20:00.000-07:00

continued from chapter 12: part 5

After a few days as a patient at the cancer hospital the resident said Hal would be discharged that morning and then she murmured something about having to wait for test results before he could leave. We saw her every so often near the nursing station but she didn't come near us again. Literally, hours later, a nurse drifted in and said, "Oh, are you still here? Doctor signed you out."

That same resident told us earlier in the day that Hal would have to go to a lab near our home for blood work. We understood her to say that we were to ask the lab to pass on the test results by phone to the doctor’s office daily and we would continue the daily tests until they told us to stop. We were both clear that this is what she said.

Hal was suffering the after effects of chemo treatment and his legs were swollen. He’d shuffle painfully into the lab, excuse himself to go off to vomit, then submit to the test. Despite our directions, the lab mailed the results and we would have been there much longer if I hadn’t phoned the doctor’s secretary to ask her if this should be happening. The doctor was angry that the lab had ignored our request and mailed the results and he cancelled any further tests.
Better you should act like a parrot and before hospital discharge, repeat back to the doctor absolutely everything you have been told to do.

Despite your occasional misadventure, don't ever leave the hospital forgetting to thank the people who made this day possible. You will probably know the "regulars" by name and you will be aware of the many simple kindnesses from these busy people who do their best with so many people dependent on them.

REMINDER TO THE CAREGIVER

Prepare your own card of information for future hospital visits. It's also useful for trips to neighborhood medical labs. Never, never leave home without the bradma card.

Get that trip-to-the-hospital bag organized and place on top a list of the last-minute things to be packed. Any time you're heading for a hospital emergency room or even a clinic visit, take the bag along even if you don't think your partner will be admitted.

Make sure you bring any pain medication or medication that counts as must-have.

Learn when the doctor generally makes rounds and have your questions ready. Don't count on the patient to pass on information--be around to get it first-hand.

Bring in reading materials, knitting, letter-writing equipment, anything to pass the time.

Keep your questions short and succinct and listen carefully to the answers. Then write them down.

continued in chapter 13: part 1

chapter 12:part 5

2007-09-20T07:04:00.000-07:00

continued from chapter 12; part 4

When you know a complete change of scene is desperately needed and your partner is attached to an intravenous, then beg, borrow or demand one of those tiny poles that attach to a wheel chair, to handle the IV's. Then you can take your partner away for a while and if the weather is good, go outside to literally watch the grass grow.
One afternoon, after a change of shift that left only unknown nurses on hand, I simply had to get my depressed husband out for a while. Not one of the stranger-nurses would help me find the necessary pole. I was savvy enough to hurry down to the emergency department and there wasn't one pole was in evidence. I ended up struggling with the wheelchair while Hal pushed the tall pole on wheels in front of him. I held the elevator door open with one shoulder and shoved him into the elevator, but his chair stuck at the entrance and a passing visitor grabbed the pole before his intravenous ripped out of his arm. That tells you how desperate I was to get him outside for even a short while. He was remarkably quiet and slightly bemused at my desire.

Regrettably, all that effort failed us because I was upset both with the uncaring stranger-evening shift nurses and with what I might have done to cause him more physical distress.

My message to you is--prepare first. If you don't have all the equipment you need, use all your considerable ingenuity and charm to locate the missing pieces, or cancel that plan and re-think it for tomorrow.

Stick with the same hospital if you can. This is absolutely critical. Some of our acquaintances switched from one hospital Emergency department to another for anything serious that arose between doctor visits. That meant starting a new file and coping with new doctors. We had moved to the suburbs in the middle of Hal's illness, and despite the fact that it meant more travel time and there were three hospitals closer to us, we continued to drive the extra miles in order to maintain continuity, knowing that if he had to be admitted his regular doctor and his records were there. I felt he had gone through enough hands as it was, and didn't want to go back to point zero to start a new file in new territory and I wasn't about to involve a new and (to me) untested doctor at this stage.

Only once did we use a hospital other than our regular one, and that was the adjacent cancer hospital. Hal was suffering from painful complications and was admitted during his regular visit to the oncologist. I never got used to that hospital despite the serene setting and wonderfully considerate nurses. You 'd think he would see the oncologist more often by being on the premises but the fact is that the guy can't cope with a staggering case load in clinic and then take charge of his patients on the floors, so, out of necessity, his residents take over, under his supervision.

During that time, Hal saw his oncologist only once, which left us thirsting for information. Who do you ask? You keep encountering strangers.

continued in chapter 12: part 6

chapter 12: part 4

2007-09-19T06:17:00.000-07:00

continued from chapter 12: part 3

Once you're settled in the hospital room, you have to establish your own kind of routine for those hours spent in that tiny room. Everything is predicated on the doctor’s visits—that person is your pipeline. The first time Hal was admitted to hospital, I felt doubly stressed, dealing not only with what was happening to him but also by trying to find little nuggets of information from "outside" to bring in each day.

Eventually we found our own rhythm. If he felt well enough, he'd get the washing and shaving out of the way before I arrived and he always recognized the sound of my footsteps coming down the hall. I'd kiss him, we'd tell one another anything that was new, and I'd hand him the morning paper. Then, while he settled in with the newspaper, I'd take care of anything that required immediate attention, like collecting his personal laundry or re-arranging his pillows or straightening his sheets, or paying for another week of telephone and television rental. That man didn't just read the newspaper, he blotted up every word and he read me snippets of news while I knitted. I knitted like a woman possessed and every member of the family ended up with a sweater during those periods. In our own way, we found a domestic and comfortable routine.

We took daily walks up and down the corridor; Hal pushing his intravenous pole ahead of him and I tugging at his robe that we never could get on properly over his intravenous lines. Sometimes we sat in the small lounge to watch the baseball game, just for a change of scene. Patients who are more fit can roam about more, visiting the cafeteria, or at this particular hospital, sit out on the front lawn and get some sun.

Hal was a nut about personal hygiene, especially wanting clean hair and I shampooed him in some strange spots. The shower room was always my idea of instant hell. Despite the pleading hand-written notes on the wall, people did not take away their sopping bandages, band-aids, wet towels and stained nightshirts. Certainly the cleaners didn’t bother. God I hated that.

One thing about being a "regular"--you know the location of the valuable laundry cart. As I recall, it came to the floor once a day and that was that until the next day. Weekends were worse. The cart came to the floor on Friday and the next one wouldn’t be in until Monday. I learned to check out that cart in anticipation of a linen emergency and I always stashed an extra nightshirt in case of need.

continued in chapter 12: part 5

chapter 12: part 3

2007-09-18T06:16:00.000-07:00

continued from chapter 12: part 2

Always keep a pre-packed bag on hand for those unplanned hospital visits. Our bag contained essential toiletries such as a favorite brand of soap, wet or dry shampoos, deodorants and writing materials, a must for inveterate note-takers. Tuck in a couple of pairs of summer pyjamas, which are softer than hospital issue and help prevent chafing. The short-style legs are especially useful under those regulation gowns when you want to take a stroll down the hall. On top of the bag I kept a list of the things that couldn't be pre-packed such as Hal's razor and medication and my last job was to snatch up the newest reading materials including that day's newspaper.

If Hal was due for pain medication the attending doctor was always willing to let him take his own rather than waste time ordering it and waiting for it to arrive. It had to be taken every three hours and he wasn't about to tamper with his temporary success. Of course, on hospital territory, you don't take anything without checking with the doctor first.

Be sure to bring something to fight boredom. Think you can't get bored during a medical emergency? Well you can. Almost invariably, Hal would perk up within an hour of arrival; it was temporary, but he felt fine. Once the crisis was over and he was more comfortable, we'd wait for his file to arrive, then for someone to take him for X-Rays or whatever test was necessary and after that we'd wait for test results. Then, he was usually admitted and we had to wait for a bed. And wait. That's why I say bring something along to alleviate boredom. A deck of cards, your Ipod, books, magazines,whatever. It will also help keep your mind off some of the situations surrounding you.

You're now in the same building with the people who know about your illness and somewhere nearby is your doctor and the resident doctors. This is your chance to really communicate, right? Well, not necessarily.
Although we found the nurses unfailing friendly and helpful, we knew that
our best chance to get any information was from the doctor, who generally made rounds at the same time each day. Hal's doctor came by twice a day and once I understood the system, I made a point of being there for at least one of those visits. The reason this is important is that you can't always rely on the patient to pass on news--sometimes they're medicated out of their minds and they will have forgotten anything they learned, or they prefer to forget what they did hear.

This is especially important when your partner is about to be discharged. Once when we were still new at this, Hal assured them he had lots of morphine at home when he had only a small amount. Believe me, trying to round up morphine at six o'clock in the morning is not something you want to do twice.

On each ward there is a front desk clerk who maintains the day-to-day business, such as passing on messages, delivery of flowers to rooms, taking phone calls from people checking on a patient's condition. If your partner is having a bad day and doesn't want visitors, tell the clerk and stress it's a one-day- only message. The clerk is your valuable link with the outside world.

Sometimes Hal was placed in a four-bed ward and sometimes a semi-private. A lot depended on the space available and the number of staff for that area. Less depended on whether we carried the appropriate medical insurance. Most of Hal's room mates were pleasant people, and some were off the wall, but he wasn't too concerned because he didn't rely on them for company. After all, they were not there by choice and few of them had the energy to make a new acquaintance. He knew I would be with him for most of the day. I still recall his delight, though, when he once had a reasonably healthy roommate who loved playing cribbage as much as he did. I failed him there-I cannot stand the game.

The cleaning staff has a set of rules I never did fathom. I saw the same lady every day and she loved getting a shine to the floors but she didn't care much if there was dirt under the shine.

Don't bring a lot of stuff into the room because it has to leave with you. Hal settled for a couple of snapshots on the bedside table, with his books, notepads and list of phone numbers tucked away in the drawer. I brought him a bud vase with a frequently replaced rose; it provided color and still left room for the water jug and telephone.

If your partner has spent a long time in the same spot in the same room, staring at the same wall, it's inevitable that he'll be depressed. During one of Hal's more lengthy stays, he was placed in a semi-private room with his bed close to the door. It was a tiny, cheerless room; roommates came and went and we simply endured the sameness until I finally realized we were losing all semblance of control. There wasn't much we could do to take charge of our lives, but we could at least move the bed across the room, next to the window. Or so I thought.

A couple of times after a roommate departed, I asked a nurse to move him, but she was obviously busy and made excuses, ultimately leaving him where he was, feeling bored and depressed. Finally, the next time a roommate departed, I politely but forcefully made the same request of an obviously overloaded nurse who decently and kindly took the trouble and extra effort to move him, all the while soothing me with reasons why she believed he should be moved. He then got a slice of sky and a view of pigeons sitting on the roof and more space, because the window ledge handled the overflow of books cards and flowers. To be honest, I don't think he cared much by that time; but it made a difference to me.

continued in chapter 12: part 4

chapter 12: part 2

2007-09-17T06:15:00.000-07:00

continued from chapter 12: part 1

I was determined to stay with Hal as much as possible throughout each new experience and I was usually able to do this by being aware of what was happening around us. Rule number one is to keep quiet and out of the way of anyone tending to your partner. In return you are freeing the nurses to deal with other patients while you keep a close bedside watch.

Probably the last time we were in Emergency, Hal was in a cubicle near the back of the room. The other cubicles were occupied by men with alarming looking sores, pallor, pain. The entire gamut. I recall thinking this must be what hell is like, but I wasn’t emotionally enmeshed, just distantly maintaining my little bit of sanity. I remember the doctor walking from pallet to pallet, pretty well saying the same thing to each one. “Well, your cancer has accelerated but we will make you as comfortable as we can.”

When I was new at this I trustingly believed that there was only one way, the hospital way, on the premise that it's their turf and they probably know the best way to do things, but I did eventually learn one or two short cuts without destroying my credibility as a sensible partner.

The time I recall most vividly was when I brought Hal in suffering pain that we suspected meant his by-pass surgery was no longer working. He had taken extra morphine for the pain and was disoriented by the time I got him into the car. He told me later that he was hallucinating and believed I was driving the 401 highway going the wrong direction from the rest of the traffic. He "saw" huge transport trucks barrelling toward us and was in shock when we arrived at the hospital.

I drew up to the Emergency entrance, pushed and pulled him into a wheelchair, parked the car illegally and rushed back to him. I hurriedly wheeled him to the clerk's desk and the woman didn't bother to look up, just sighed and murmured, "Just a minute," and kept on diddling with her computer. She has every reason to be grateful that a counter and window separated us. I was still in my obey-the-rules mode, and I had it in my mind that if I didn't check in with the clerk first that no one would help us. Despite this belief, I spun the chair around and rushed him through into the department, calling out to the first nurse I saw. He was barely conscious by then and three nurses quickly converged and began to work on him. When I was satisfied he was all right for the present and I felt damned good and ready, I returned to check him in. That was our only bad time; staff allow for the fact that most people coming through those doors are upset and often in a hurry.

continued in chapter 12: part 3

Chapter 12: part 1

2007-09-14T07:03:00.000-07:00

continued from chapter 11: part 6

Your introduction to the hospital system will begin either by way of the Admitting or Emergency departments. Hal's admissions always began hurriedly through the Emergency department and the good news is that you will have experienced staff on hand. Emergency patients generally go to the head of line for X-Rays and other tests, but the-not-so-good news is that there will still be delays and they can be maddening. Each patient is on a priority list for care so you wait, and in a perverse way, it's encouraging to know that there are others ahead of you with more urgent needs.

There won't be a bed immediately available if your partner is to be admitted; you can pretty well bet the farm on that. So, while you watch him struggling to get comfortable on that hard pallet, your mind plays tricks with you about what's happening to the person who is currently occupying the bed you're waiting for.

No matter how you make your entrance, you will begin with the admitting clerk and you will part with a lot of information in return for your bradma, a plastic card that you must present each time you come in. The bradma is keyed into your file in the computer, and you will be required to give the same information already on the file to ensure that everything you told them before is unchanged. Even if you've been in and out a dozen times, the clerk will start from scratch, asking you for exactly the same information.

What you've read so far gives you an inkling of what to expect on your first visit and now it's time to prepare in case of need for a second or more visits. Take a few minutes and rough out on a file card everything you might be asked such as your full name, address, phone number, next of kin, and then type or print the information neatly on a file card. You'll also need the family doctor's name, address and phone number, which is not something etched into my memory. Also the name and address of the oncologist or surgeon or whoever else as involved in your ongoing care. Next time, simply hand over the card and let the clerk verify the information from there. This simple act will guarantee a healthy drop in your blood pressure.

continued in chapter 12: part 2

chapter 11: part 6

2007-09-13T07:07:00.000-07:00

continued from chapter 11: part 5

I have a special fondness for day shift nurses. They are allowed to use first names now, though that changes every few years back to formal, and then back to informal. They were busy, terribly busy, but they always found time to be human and leave a feeling behind that they truly cared.

Hal had only two bad experiences. One nurse, one of the weekend night stranger/nurses, was present when he was having agonizing pain, which the doctor thought might be a kinked bowel. He asked for more morphine and she accused him of being addicted to the morphine and dishonest about the pain.
She was gone when I came in the next morning and I couldn't get enough information about her to formally complain. When he told me about it he had tears in his eyes; he was helpless and she made him feel inadequate. She had no right. I hope to god she is out of the profession. She should be.

The second nurse was the most competent person I saw; she knew every piece of machinery and how to keep it working, she knew how to change a bed while causing the least discomfort and she was also the coldest zombie I've ever encountered. She did not smile at patients, only at residents. I came into the room one day when Hal had asked her to help lift him out of the chair. She stood in front of him, motionless. He reached forward and put his hands on her shoulders.
"Don't put your hands there, you'll hurt my back," she snapped
Then she then brusquely lifted him up and propelled him to the bed and marched out of the room. Not one word about how they should get the job done as a team.

One night, actually at two in the morning, Hal's roommate was sitting up in bed reading because he couldn't sleep and in walked the Zombie. She knew this patient was an economist and using her normal strident voice began a litany of questions about her investments. Hal waited a couple of minutes and then asked for silence and she immediately left the room. The roommate called his thanks over the curtain and said he wasn't in the mood for a discussion either.

It took me a long time to realize she was another member of the medical profession who hates, simply hates, caring for terminally ill patients, and she lets them know of her dislike. There are a lot of them; but bless the ones who understand the dying.

There is generally a nice balance between doctor visits and nursing care, although they may not agree with me. The doctor is not there all the time and I assume maintains his objectivity while the nurse has valuable input if she is allowed to provide it.

Some had an even more special gift and when one of those would enter the room Hal would visibly brighten and say,

"Oh, hi, I didn't realize your time off was over; welcome back."

I found my way into his chart because, for a few mornings I'd arrive and Hal wasn't washed and his teeth hadn't been brushed so I helped him get this done; from then on that was my job. That was okay and I was glad to help, but as he got weaker, I found it tougher to get him on his feet and over to the bathroom, with his intravenous pole trailing behind. And I sure as hell wasn't going to ask the frosty nurse to help me. Between us, we contrived ways to get this done. Bed baths are the pits and we did our best to avoid them. There was one attendant to handle the shaving, and he had a way of appearing when I was struggling to lift Hal onto his feet and he’d gently take over. He was a nice man.

The trick is to separate the doctor from the myth; this person has chosen a field of study that takes time; he saturates himself with the information he needs but he doesn't heal by magic; he follows the rules and often the machinery kick starts back into action on its own.

My favorite back-to-reality manoeuvre was to imagine them walking through the corridors wearing the hospital issue nightshirt, minus ties and the floppy paper slippers. Keep that in your memory and you'll bring the doctor down several pegs so that you're now eye to eye.

Now that I don't have much to do with doctors, because I'm well, I realize I got sucked into the doctor-is-god syndrome. I am convinced that they know their craft and they are nevertheless sometimes stumped, and whatever the outcome rests more with the patient's attitude than anything else.

I will remember with love the surgeon who through happenstance became Hal's major doctor during the last phase of his life along one particular resident and I will always treasure the memory of the open caring and competence of those overworked nurses.

And for my own good, I am back to thinking of doctors as human beings who have a lot in common with plumbers.

continued in chapter 12; part 1

chapter 11: part 5

2007-09-12T07:17:00.000-07:00

continued from chapter 11: part 4

Hal's nurses were for the most part, young and gentle. They bantered with him and seemed caring.
And then there was the weekend staff. Most weekends were a horror; the nurses were passive to the point I thought they had all been lobotomized. They clustered about the front desk as much as possible, seemingly to keep as far away from patients as possible. They wouldn't make the simplest decision without checking with the doctor, which they were afraid to do.

For instance, there was the GOT A PASS FOR THE DAY incident I will always remember. Hal was beginning to stabilize from a painful episode; he was off the intravenous and the doctor encouraged me to take him away for a day. Wonderful. We would do this on Sunday. I planned to take him home for a few minutes to see the things he missed and then we would drive north to Mark's lakeside home, where other family members were gathering for our usual next round of birthdays for that month.

This was pretty exciting stuff. Hal was a little apprehensive because his world was becoming the hospital and I believed the outside would be good for him. I arrived early in the morning and a weekend stranger\nurse announced in a disinterested voice,

"You can't take him away until the nurse comes to take a blood specimen."

" Okay, where is she? Can you call her? "

" No, there is just one nurse and she is working her way through the floors."

We were on the top floor. She appeared at eleven o'clock, drew the blood and announced we couldn't leave until the test results were received. I explained the rush and she said she would do her best to have it checked for us so we could go. At noon I returned to the front desk for the umpteenth time and asked if the test results had come back yet. The nurse languidly glanced at his chart and said,

"Why yes, they're here. You can go now."

Did that test matter? I doubt it. Was there anyone there to interpret the meaning of the test? Not on your life. It was the weekend. The day was half gone before we left. I still feel the rage and frustration when I think of this. I couldn't find a resident to clear the logjam so I simply waited and seethed. Learn from my error. If you have a pass, use it and get the hell out of there.

Hal did see the house for a few minutes, which turned out to be the last time and I hurried him along because the family had been waiting for him since morning.

Frankly I needed this break. He didn’t. He would have been happy to remain at the house. He arrived at the lake feeling weary having passed up on lunch. We helped him into a chair and he ate one of Olga's famous breaded chicken wings. Then the pain began. Not the fault of Olga's wings. By three o'clock he was in a lot of pain and I hurriedly returned him to the hospital where he vomited violently for hours. The blockage was causing further problems and we were now reaching a critical stage in his illness. How sad thing that his last day out of there was spoiled.

Let me save you from this experience. First, when the doctor offers the pass or you request it, you tell him exactly what you have in mind and what time frame you are looking at, with an emphasis on the departure time. Then you ask him if there is any reason that there might be a delay in leaving.
If you come for your sweetie, as I did, and you hit this snag, then demand to see the doctor, the resident and if they are not forthcoming, tell them the test/treatment/ hold-up will have to wait until you return and then you leave. Vamoose. Split.

continued in chapter 11: part 6

chapter 11; part 4

2007-09-11T06:28:00.000-07:00

continued from chapter 11: part 3

I can see why the god complex overcomes some doctors. A hospital is like no other place on earth; it has the hushed, though busy atmosphere of a temple. Doctors spend so much time there that they don't have a healthy dose of reality outside. It must take a special kind of spouse who can handle some of those egos and value the real person inside.

Some doctors have a special agenda like collecting statistics about the various patients, or performing various surgical techniques and so on, but what they don't really want to do is cross over that impersonal line and relate to the patients. Bless the ones who have learned to enjoy balancing that line.

I used to wonder what was going on in their heads when they clustered around Hal's bed, asking him questions about his condition when Hal was flying on morphine. Did they think they were getting the facts or didn't it matter anymore? Are they aware that a heavily doped patient is rambling and often hallucinating? I tried to remain quiet and give Hal his dignity but sometimes I would take his hand and say, "I think the morphine is speaking for you honey." And I’d quickly respond for him.

Emergency departments are generally staffed with people who have had critical care training and they make swift but expert opinions. Our whole experience began in emergency departments and I always felt a sense of relief when Hal was in their care. Someone would know what to do.

The best diagnostician of the bunch was one doctor we encountered a couple of times in our hurried visits; he turned out to be completely accurate about what was happening although his opinions were discounted at first when I took Hal to his regular clinic a day or so later.

The last time we went to Emergency, Hal's favorite resident, Dr. Walker, came to check him. Dr. Walker greeted him and said to the nurse, "Mr. Tennant and I are pals." Now, that isn't an earth-shaking statement but that made Hal's visit almost a pleasure and he felt this man cared about him and what was happening to him. It's damned important when you are getting a glimmer that things are beginning to wind down and there isn't much you or anyone else can do about it.

Hal's illness coincided with that seven-year syndrome, a shortage of nursing staff. I was aware of this because of the hospital work I used to do, and I took their short-handedness into consideration.

The nurses in emergency were generally breezy and informative and thrived on the fact that they wouldn't be stuck with any one patient for any length of time. There aren't that many nurses who endure in a setting of long term care patients but the ones who do deserve a special medal.

continued in chapter 11; part 5

chapter 11: part 3

2007-09-10T07:05:00.000-07:00

continued from chapter 11: part 2

An often-voiced complaint from all of us in the support group was--- If we miss the doctor's visit to the room, how do we get current information? I never felt that the doctors we dealt with were lazy or incompetent; they simply couldn't take the time to relay messages to caregivers and this is where some sort of interventionist is needed.

I envisioned a medical data keeper. I would phone this person, Hal's file would flash on the screen and then I could say, for instance, "Listen, I requested a sedative for Hal yesterday because he felt so depressed, but the dosage is so strong that he sits in a chair with his eyes rolling up into his head and it took me two hours to get some food into him. He still needs a little dulling of the emotional stress and I missed the doctor's visit so what should I do?"

The nurses haven't time to feed him or even check to see if he is eating. If I'm not there when the doctor comes in, I'll never know what is happening and I couldn't rely on Hal for information, since he could be forgetful because of the large doses of morphine.

“Tell the nurses,” you say. I do, and it's duly noted in the charting but when will any information funnel back to me?

I want that clearinghouse person. Sometimes we feel desperate about what we should be doing and we need direction.

I never had the heart to call the doctor for a recap because I could see the amount of work he was trying to handle. I did call his secretary if I ran into problems at home with Hal and I was always careful to give concise descriptions of the problem; and those people are wonderful. They learn to tell who has an immediate problem and what can wait.

The head nurses at Princess Margaret hospital would take calls from worried caregivers and I will be grateful to them for the rest of my life. I’d rehearse the problem, then call and get one nurse who would listen carefully and either say, “bring him in, “ or make a suggestion about settling the problem at least for the night.

Most hospitals give out post -operative sheets of information to take home and that‘s good. You’ve had some of your colon removed, so you might expect some problems while you are healing and you can re-check the discharge sheet.

Some patients are advised to work through the family doctor while they are recuperating but I refused to take that route. I was able to avoid that because Hal’s surgeon arranged for regular follow-up visits and then eventually we did have the Oncologist. I just don't believe you can get the best for your partner if you are working between too many medical people. If you live out of town, away from the specialist, then you haven't any choice.

I did some serious strolling past the nursing station while Hal's doctor was chatting with the nurses; it was important to me that he treated them like the professionals they were.

Only once once did I encounter in the hospital one of these autocratic I-am-god doctors, filling in for Hal's doctor over a weekend. You could hear him the minute he got off the elevator and onto the floor. He didn't walk into the rooms, just stood in each doorway, shouting at each patient as though those objects in the beds were all missing their ears. His style was downright rude and insulting with the nurses, never looking them in the eye when he spoke and to their credit, the nurses did not take this out on the patients. Did we complain on their behalf? Who would we tell, if we dared?

continued in chapter 11: part 4

chapter 11: part 2

2007-09-07T04:03:00.001-07:00

continued from chapter 11: part 1

Even if you have an upfront doctor who has figured out how much information you want, you'll need to go over the information more than once. Those 40-45% statistics they tossed our way occupied my mind so completely I didn't always recall the rest of the discussion. This is why I suggested that you keep a log of your doctor chats and medication. You'll be able to discuss your partner's illness more knowledgeably and you'll be considered a sensible person wanting answers. You can make notes immediately after speaking with the doctor so that you can review it later.

This is your chart and it’s every bit as valuable as that thick stack of papers your doctor and nurses refer to.

All of my compatriots said that while they thought they had absorbed everything the doctor said in a stressful situation such as reporting after a major operation, they couldn't recall much later. There is a strong need for the information to be given at least twice and we should be writing it down.

I used to fantasise about a medical ombudsman/translator who would step in at each doctor visit to review what just took place.

Get to know your doctor. That insensitive fill-in doctor who bluntly told us that Hal he would be dead within two years left us shaken. We asked for the truth but he seemed to delight in presenting it as cruelly as possible.He had the option of giving us the truth but also could have told us that there were things to be done to extend Hal's life. Instead, he was so desensitized that he no longer cared about his patients.
Just because doctors and nurses deal with death constantly doesn't mean they're any better at dealing with it than us civilians. And, they have the promise that one of those testing programs will prove to be positive.

Time and again, when I asked my support group caregivers about the good and bad to do with their partners' illness, they complained about the length of time taken to diagnose the illness. They couldn’t understand why, since they gave the doctors notice that something was terribly wrong.
They never felt the doctor understood the urgency. I didn't hear of one case of immediate diagnosis or that the cancer was found in a general check-up. I'm sure it happens. There was a lingering anger that the original doctor didn't get more expert opinions sooner but I remember how much was involved before Hal's colon cancer was diagnosed.

My friend Berry' story says it all. Ronald had been successfully operated on for renal cancer five years previously. Then he began getting headaches which struck more frequently with time and were rapidly reaching the unbearable stage.
Ron went to the family doctor and as usual, he insisted on going without her. The doctor sent him on to a prominent neurologist who did many tests and found nothing. He was handed prescriptions for Tylenol Three and she said the frequent tests with no conclusion just wore him down.
Eight months after his first complaint Berry went to see the family doctor and said to him,
"Look, I can't help what the tests show; this man has a brain tumor and you've got to do something."

She and Ron never doubted that he had a tumor and her urgent meeting with the family doctor finally broke the log-jam. The family doctor passed on her concerns to the specialist, who then passed on the message that he would do an angiogram, a procedure of injecting dye to the brain followed by X-ray. He warned that it was a dangerous procedure and she found that grimly amusing since she was watching her husband slowly waste away with pain and fatigue. The test revealed a tumor, by then too large to remove completely, but the doctor decided to operate because the headaches would be relieved, and they were.

Berry couldn't help wondering whether the tumor was treatable a year ago when they first asked for help. She met the specialist for the first and last time immediately after operation. She used her family doctor as the go-between because it seemed at the time to be the best way for her and she was feeling some of the mystique of the specialist with the power of life and death.
Ron didn't suffer pain after the surgery and consequently he never used the prescription for morphine that he took home from the hospital. He didn't have any further tests while at the hospital. He was terribly weak although his abilities were not diminished as a result of the brain surgery.

Shortly after his discharge, he was instructed to go to the local hospital to see his doctor for a post-op check up. Berry waited in the car in the parking lot at his request and he slowly shuffled inside. Shortly after, she was surprised to see the doctor threading his way through the parked cars to find her. He told her that Ron was being admitted because of his general exhaustion and weakness and lack of appetite. This is where the communication broke down again. The doctor told Ron, when Berry was not present, that traces of cancer were showing in the liver. They told him but not her. Ron later told her and then, says Berry, he seemed to give up after that.

That wasn't the only shock she received. She didn’t know that he was already considered terminal until she sat down with the discharge planner when Ron was about to leave the hospital. The planner asked her what help she would have at home and it dawned on her what the real question was--can you handle his dying on your own?

"I could have called the doctor right away to get that clarified, " said Berry, "but damn it, I just felt the hell with them, we'll manage on our own. I'd always been told I was a strong person and that I could stand on my own two feet. I just felt if I lost control I would howl."

See why I say we need our intervention specialist? Berry desperately needed one person who could keep track and keep her informed. Granted, she might have handled things better, but you're looking at a distraught woman who is trying to keep her balance while her world shifts.

continued in chapter 11: part 3

chapter 11; part 1 The Medical Profession

2007-09-06T03:40:00.000-07:00

continued from chapter 10: part 7

And now a word or two about the medical profession. Face it people, they need us as much as we need them, so we have to co-exist. Without us they have no work and without them, we're up the proverbial creek.

I had lots of time to study the people who were a large part of my life for a year and a half. Between trips to the emergency department and five hospital admissions, studying the medical profession became my vocation.

Let’s begin with doctors and now that I'm smarter, I suggest it’s best that we think of them as mechanics or plumbers. You place the malfunctioning equipment in their hands and trust they'll get it running again. How they get the machinery going is something you're never completely clear about but who cares as long as they get the job done.

Just don't ask for a warranty.

The first lesson I learned is that doctors will patiently answer your questions but that’s not the point; the trick is to know what to ask. We branch off into two camps here—the ones who want to know everything versus the ones wanting selective information. If you want total upfront reporting, say so clearly. Consider the doctor’s dilemma- you can find yourself playing an adult version of Go fish if you don’t specify where you stand.

My friend Rachael slowly learned that of the three doctors who cared for Evan, the urologist was the one who had the least problem communicating the truth to her. In the beginning the surgeons believed Evan had diverticulitis and were shocked during surgery to discover three tumors. She learned later that one doctor assisting at his surgery didn't think it was worthwhile to even try to remove any of it. Later, when they picked up his most recent X- rays to take to another doctor, Rachael peeked inside the envelope and that’s how they learned his cancer had metastasised to his liver. The doctors simply couldn't either bring themselves to tell her or they played that game, "But I thought you told her."

Despite the fact that I asked for the facts and believed I was absorbing them, near the end I wasn't comprehending that soon I'd wake up and Hal would be gone from my life. I hadn’t had any experience with the dying process and it wasn’t getting through to me. That explains why, when the Emergency room doctor told me that Hal's cancer had seeded itself to the abdominal wall causing Hal’s severe pain, it sounded perfectly rational; but if he had said, "your husbands body is riddled with cancer", I might have faced it more quickly, but I learned.

continued in chapter 11: part 2

chapter 10 : part 7 Gift Suggestions

2007-09-05T08:13:00.000-07:00

continued from chapter 10: part 6

There were some things I would have liked for Hal's comfort but I never had time to track them down and hospitals seldom have more than one of the extras.

Egg crate mattresses topper. Made of soft foam or water-filled plastic, these mattresses prevent sharp bones coming in contact with a standard hospital mattress.

Sheepskin cover. Meant to lie on, with or without the egg crate mattress. Acts as a buffer between the body and the mattress.

Soft pillows.Down-filled pillows are perfect, but anything soft will do. I learned to tuck pillows of various shapes and sizes around Hal for optimum comfort.

Books. If you’re not sure what the patient has read, bring along a catalogue from a book store or the latest book review sections from the newspaper and let him choose.
If your patient is a voracious reader, offer to do a weekly library run.

Sheepskin booties, for want of a better word. They prevent the feet from chafing against each other.

Fruit and flowers. These old stand-by’s are fine, although you might check about allergies first. Hal’s favorite flower arrangement was a dramatic arrangement of Birds of Paradise and they lasted for a long time.

You can look into bringing DVD movies in or the patent's favorite music. find out what equipment the hospital finds acceptable

I'm sure a lot has changed since I made this list but I am certain these items are still needed.

continued in chapter 11: part 1

chapter 10: part 6

2007-09-04T08:36:00.000-07:00

continued from chapter 10: part 5

We returned to our new house feeling exhausted but looking forward to settling in.

I busily set myself to unpacking, threading my way through the furniture to put things away. Blame it on the tiredness, but I stepped over Hal three times before I realized he was stretched out on the narrow corridor floor, since the bed wasn’t together as yet and he was beyond uncomfortable. I found the bed and the bedding and got him settled. His condition worsened during the day and evening.

The next morning, I packed him into the car and drove him to the emergency room back in our old neighborhood. His blockage had indeed re-occurred and he was admitted for further surgery, this time to do a by-pass of the old surgical site. This was considered palliative surgery; it was intended to make him more comfortable, at least for a while.

Early on the morning of Hal’s surgery, I dressed to prepare the drive to the hospital ; I was frightened and sobbing to myself. I had enough sense to know I had to get myself into a better frame of mind before I left for the hospital, so I pushed past the debris and settled in my favorite chair. When my body felt as relaxed as it was possible to be, I said to that inner light I knew looked after me, "Look, this operation is terribly serious and Hal has been warned there may be complications; what kind of strength can I bring to put him in the best frame of mind for this?"

The answer was short and sweet-- sing. Had I just been short-circuited? There isn’t anyone anywhere who will tell you that I should be encouraged to so much as hum. All right then, I’ll sing. But what? “Oklahoma” came into my head and I don’t know any words past the second line. Fake it. I began to sing at the top of my lungs and quickly the shaky sobs disappeared and the voice got stronger if not prettier.

I dialled the phone to reach Hal.
“Sweetheart, I can’t explain before I get down there, but there is something you must do immediately. Trust me. You must sing, you can sing in your head only but you must sing, and the tune I’m using is Oklahoma.'

He took this very well and promised to begin right away while I prepared to join him.

When I arrived at the hospital he had already been sedated, and as I approached his bed he waggled a finger back and forth and mouthed the words to the song. We sat together, holding hands and humming, mouthing the words we knew, until the porter came to wheel him away. He was smiling and his eyes were twinkling as he left.

His incision healed quickly and he was released in six days. My faithful inner friend had helped again.

Back at the new house I had to cope with deliveries of appliances, then wait for people to hook them up and the usual snafus when people didn’t deliver when promised. I shamelessly called on friends and relatives and they all pitched in without a whimper. This way, I could spend as much time as possible with Hal, and we were now about fifteen miles further from the hospital.

continued in chapter 10: part 7

chapter 10: part 5

2007-09-03T04:31:00.000-07:00

continued from chapter 10: part 4

The inn we booked into had so much wrong with it that you’ll think I invented this, but every word is true. We were directed to a room that hadn’t been made up, and the tables were littered with dirty cups and overflowing ashtrays. We skipped the idea of room service and went back to the desk to get that straightened out.

That’s when we learned they did not have a dining room let alone room service. What they had was proximity to a restaurant next door, so we tramped across the snow to join a wildly enthusiastic Friday night crowd. We were so tired that one drink and barbecued brochette shrimps tasted just fine and we headed off to our room feeling much better.

At two in the morning Hal called the front desk to ask if the people on the other side of our adjoining door could be asked to stop the partying and douse the cigarettes. The door was far from airtight. At seven o’clock I called the front desk and politely told the man he had five minutes to clear that room or I would stand in the hallway and scream, "Fire!" at the top of my lungs. The party ended in three minutes and twelve seconds.

We decided we’d had enough and wearily dressed, skipping showers because there were two tiny hand towels and no face cloths and by that time we stopped caring. There was also one coat hanger in the closet. The sounds through the walls of flushing toilets and thundering bath water was just another irritant.

As we prepared to leave, I wrote DUST ME on the television and as the final insult, I found an empty cupcake paper and wad of gum left by some other happy camper in the drawer of the bedside table.

I roughed out a stinging letter to the manager, but in all the moving-in confusion the letter was never mailed.

Too bad. The manager probably thinks he/she is adequate.

continued in chapter 10: part 6

chapter 10: part 4

2007-08-31T06:54:00.000-07:00

continued from chapter 10: part 3

The proverbial wheels fell off on the day we were to move to our new place. A move at such a time was beyond stressful but we had no choice. It was Saint Patrick’s Day and also marked the day of the last and worst snowstorm of the year, punctuated by freezing rain.

Many friends made themselves available to help but because we were emotionally derailed by Hal’s obvious health complications, they weren’t called.

For several weeks leading up to the move, Hal began getting pains similar to the ones that began this ordeal; we decided together we would try to muddle through this until the move was over. At that time, believe it or not, the move was most important. We had a pretty good idea that he was in trouble but we didn’t mention this to anyone. We were also disastrously sleep deprived.

One thing was certain; the packing was only one- third done by moving day and this was an eleven -room house.. Mike and Lorrie came over the night before and Mike still dines out on the horror story:

"I walked into their bedroom and there were the usual books stacked on the bedside tables, the bed was neatly made, the pictures and ornaments were still on the walls and the drapes were still hanging. I checked their studies and the computers were still hooked up and the books still on the shelves; even the waste baskets were full."

He put in an emergency call to brother Mark and his wife, who planned to come over anyway. They arranged to borrow a small truck and took the kids out of school to help.

We had stayed at Mike and Lorrie’s the night before the move and during the night Hal had a violent attack of pain and vomited a lot. I held him in my arms between bouts until he fell asleep at dawn, when I dressed and headed for the house. Mike heard me and quickly followed. It was snowing heavily.

At the house we packed like something out of a speeded- up silent movie. Mark and Olga and the kids arrived and between them they kept ahead of the energetic movers.

In the meantime Hal phoned to say he felt fine and was on his way over by cab but he didn’t arrive. By this time the phone had been disconnected I trudged through the snow to use a neighbor’s phone. It rang and rang and finally he answered. He had fallen asleep. He was on heavy painkillers and said he would take the subway and streetcar over and I almost popped a fuse. He eventually promised to take a cab and finally breezed in an hour later.

The movers were finally loaded around five o’clock, and a blessed neighbor was fielding phone calls for us so that we knew when the closing was done and we could arrange to get a house key. Hal went ahead with the movers and we stayed behind to do the final cleaning.

I had one of my more ambivalent feelings about morphine that night when we arrived at the house after a frightening trip on the ice-coated highway to find Hal in a cheerful daze and directing heaviest pieces of furniture placement to the wrong rooms, and I knew I would have to sort that one out on my own, later.
We were left with a tunnel arrangement, enabling us to get into the house, swerve left to the kitchen, step over two huge cartons and around the bookcases standing far out from the wall and through to the bathroom and bedroom. Generally that wouldn’t be a problem but in this case I didn’t get it sorted out for two months.

The movers left, the kids took their exhausted bodies home and we fed the cat and picked up our overnight cases and headed for a nearby inn to spend the night. On the way we discussed ordering dinner from room service (it was after ten o’clock) and having a wonderful hot shower.

Our ordeal wasn't over just yet.

continued in chapter 10: part 5

chapter 10: part 3 Accept Help

2007-08-30T04:56:00.000-07:00

continued from chapter 10: part 2

Lorrie and MelissaI came by one day when I was feeling depressed about Hal’s set-back after a round of chemo.

Melissa sat with Hal and they had a good father-daughter chat and Lorrie took me out a plant nursery, one of my favorite places, and the trip was like walking into the technicolor of Oz from the bleakness of black and white Kansas.

I could focus on living, growing things and feast on the wonderful colors. You don’t realize how tense you can become until you try unclenching your jaw. I had so much more spirit and energy for days from that simple excursion.

Melissa was busy with a new baby but she provided an invaluable service. In the latter part of Hal’s illness, there were many scary times when I wasn’t sure whether to pack him off to the hospital or call the doctor or wait it out. I would call Melissa and she would calmly and rationally help me work through it. If a phone call to a doctor or head nurse was necessary, she helped me frame the words so that they were concise and left no doubt as to the problem. By the time we had worked out the strategy, I had calmed down and my tone of voice was back to normal.

Other times, I just needed to talk about what was happening and she was a truly wonderful listener. That was a lot of stress to pile on an already stressed new mother but she was unfailingly gentle and practical at the same time.

Sometimes it’s unsettling to offer to sit with a seriously ill friend but thinking about it is much worse than being there. You are looking at a frail body but the person who is your friend is in that body; it’s just different packaging. You are bringing the outside with you and your visit does such good. You talk when the patient shows interest and otherwise you sit quietly, even with a book. You are also probably giving the caregiver some time to get out of the house, free briefly from worry.

continued in chapter 10: part 4

chapter 10: part 2

2007-08-29T08:33:00.000-07:00

continued from chapter 10: part 1

Friends from the office have a special role to fill; at first the office gossip is fine, as long as it isn’t about an office reshuffle that might stress out the absentee. Bring in messages of concern, keep it light and remember you don’t have to stay long. Berry remembers with gratitude the three office friends who faithfully came once a week to see Ron while he was recuperating. He appreciated being able to keep up with office happenings and he felt part of the group and not an outcast.

Hal was never one to ask his sons to help him with any sort of home project, but when they learned he was planning to rebuild the back porch shortly after his operation, it became a family project and provided such closeness. Hal designed it and ordered the wood and Mark and Mike were present to tear down the old porch and rebuild. Hal was feeling pretty weak but interested, and I have snapshots of him sitting in a chair on the back lawn while the boys worked. Hal was a good project manager, too. He was delighted to see how much Mark knew about building and Mike was only too eager to learn for when he has his own place. He was content to watch, soak in the closeness with his sons, and give advice only when asked.

Keep a list taped on the wall near the phone with things that require doing that you haven’t been able to do. If friends or family offer to help then let them cook, bake, mend, perform minor repairs, do errands or possibly give some business advice over matters the partner looked after and is not prepared to deal with now. Use that list and if one item is particularly urgent, then speak up.

When Hal felt well, he met friends for lunch regularly. Later, when he was in hospital, his lunch buddies came to visit there on their way to lunch. The talked shop and joked and left him still feeling part of the bunch. That was such a good tonic.

During the times when Hal was recovering from a round of chemotherapy, anxious friends would ask to visit and we often found the visits hard to handle. There are two groups here--the ones who pop in and instinctively know how long to stay and what to do and others who who are unsure of themselves. I didn't want the latter group to come but did I say so? No.
We both appreciated their caring but it was hard for me to concentrate on simple tasks like making coffee and checking to see if there was cream and I wasn't into small talk anymore.

I checked these feeling out with others going through the same experiences and they all felt the same way. By all means, come and visit but here's what you do. You bring with you a coffee cake and the coffee from Starbucks or wherever, and make it a short visit.

You are valued and welcome, but the household is not running normally and your help is welcome. Social visits are healthy and necessary but your hosts aren’t living a normal life as yet.

Other things you might do is to bring something ready made such as a casserole something will keep for a few days. Getting out for groceries is hard to do and after a while it doesn’t seem important.

The length of your visit can vary, but keep it to half an hour or so unless you are urged to stay longer. If you are, time the rest of the visit in half hour increments and watch for signs of weariness. Some of the recuperating people couldn’t bring themselves to ask a dear friend to leave because they were tired. Hal was this way and although he knew the friend would understand he couldn’t say please leave now.

It’s best that when you arrive, to ask the hostess if half an hour is about right , then take your leave. Hal could sometimes excuse himself to return to the bedroom to rest but not always.

Phone calls were always welcome but keep them brief. Occasionally I would be caught on the phone with a friend who had just learned of Hal’s illness; this person wouldn’t know how to get off the phone and I was too drained to do anything about it and after I felt so weary.

All the while I would be listening for sounds from the bedroom. You’re not behaving like a normal person during tense times and you simply forget temporarily how to handle what should be mildly difficult situations.

We would accept those infrequent dinner invitations and that felt good. I often wished more people would ask us over to their place. They would assume we couldn’t make it. It would give Hal something to look forward to and then we could leave when he said the word.

Another way to help is to send casseroles, cookies, puddings, fruit, or bring a favorite movie, if not for the patient then the caregiver.
I worked hard to give Hal nutritious, attractive looking food he could manage but when he was settled into bed for the night I would settle for a peanut butter sandwich. I forgot after a while what a vegetable was like.

We had a grim joke that for every pound Hal lost, I would gain one.

continued in chapter 10: part 3

chapter 10: part 1 Accept Help

2007-08-28T08:30:00.000-07:00

continued from chapter 9: part 4

I’m a member of the I’d rather do it myself school from way back and learning to accept help during Hal‘s illness was another lesson to learn. I had the idea that if I didn’t do everything myself I was showing weakness and that might not help Hal. My false pride slowly evaporated as I learned the value of receiving sympathetic support from friends and family.

This is partly about learning to say yes. The only time the rules change is if you are by nature a taker, a person who willingly turns over responsibility to a willing ally; then you are better off learning to say, "No thanks, I can do it myself," or you become someone you won’t want to know. A clinger.

Sometimes you can give help when visitors are uneasy. "I’d like to visit but what would I say?"
I used to ask questions like this when a friend was ailing and now I know the answers.
In the early days, your friends will be as upset as you are and they will flounder around waiting for cues from you. What can they do for you and your partner? Also at first, you may feel you want to handle things by yourself while you are figuring things out, and you probably can.

There are two stages to the early part of a prolonged illness. First is the stage when people send cards and books or offer to run errands or do some driving, but since cancer takes a long time to control, don’t be disappointed when the phone calls and the offers to help start to fade away. It’s not that people care any less, it’s just that they have their own lives and problems and your cancer isn’t as imposing as it was at first.

When Hal told friends about his cancer, they were upset and spoke of feeling helpless, but always finished with, "If there is anything I can do." The response to I’m feeling helpless is that the fact that someone cares and is telling you is such a help. The words don’t have to be flowery. Just be there.

And sometimes just take the initiative and do something; bring food, send a book, flowers, audio or video tapes.
Our pal Connie told me much later that she had read somewhere that the best thing one can do is to keep in close touch and listen for clues of needed help and that’s what she did. She phoned regularly and never talked long. When Hal was feeling punk from his chemotherapy and I needed to get out to do some errands, she dropped everything to slip over bearing a basket of fresh fruits and some of Ian’s health bread that hit the spot with a guy who hadn’t felt like eating. She sat on the foot of the bed and they talked shop and when she left Hal was so much more relaxed and animated for the rest of the day.

continued in chapter 10: part 2

chapter 9: part 4

2007-08-27T06:45:00.000-07:00

continued from Ch 9 part 3

Excerpt from a letter written by Hal :

I’m going to heal myself.
I am not scared-just a little confused about what to do. Would I be better off scared? i.e: am I too complacent?
Maybe I am complacent because I see myself as having been incredibly lucky all my life with no misfortunes to speak of-nothing that could not be overcome. I just can’t believe my good fortune has suddenly been reversed.
Good things will continue for me as they always have-and so, somehow, this bad thing that exists only in the Ex-ray plates will either go away or be overcome by my optimism and my life-long propensity for good fortune.
Dosdall (author Claude Dosdall) generalizes about the needs and responses of the “cancer-prone.” Does having cancer make me a “cancer-prone” by definition? Am I kidding myself?
Must I have a strong passion for life in order to survive?
Isn’t it enough just to like being alive- taking each day as it comes and enjoying whatever it offers?

continued in chapter 10: part 1

chapter 9: part 3

2007-08-24T08:29:00.000-07:00

continued from chapter 9: part 2

If you feel stressed simply coping with your cancer, consider seeing a psychologist or psychiatrist or a well-recommended counselor. I learned of one psychologist in our city who worked almost exclusively with cancer patients; some of our support group members took this route and felt it helped them. Don’t load yourself with more than you can take. But if you feel your cancer is crushing your spirit, then find a professional counselor to help you work your way through.

Be clear about your goals. Your goal is to make each day count, to be able to reach out and accept help and any love coming your way and to be able to handle the rough moments we all have.

Take your problems one at a time. If something comes up, deal with it while it’s one problem and then move on. Obviously if something monumental comes along then make sure your partner is steadfastly beside you while you work your way through this.

Don’t be complacent about your good days. Use them well. Enjoy the day but remember clearly you are changing, casting out the outmoded habits that will not enhance your life. A relaxed and serene peace of mind is your aim. Save the worrying for what might be.

Practice your mental imagery, and if that sounds too much like work, then call it daydreaming. Imagine yourself feeling well, gaining success with treatment. Imagine your immune system devouring the cancer and spitting it out. Do what feels right to you.

Anticipate some things that might come up later. For instance, Hal and I took advantage of the recuperative time to work out a plan for when he might not be feeling good. This is where my obsession for planning proved itself. How would we deal with a lack of appetite when his weight might be decreasing rapidly? We agreed that nagging and fussing was not going to work. Instead, we would figure out on a daily basis, the minimum amount he would require for the day, and he would decide what he would consume and when. The deal was that he had to take the required food but he would choose when and I would attempt to make it as nutritious, and in case of nausea, as odorless as possible. This worked well for us.

If you’re on your own, next time you’re at the clinic, ask to see the nutritionist and get advice about handling loss of appetite if and when it happens. You may be advised to have some easily prepared foods on hand or tinned liquid nutrients that are palatable if chilled.

Ironically, while we were making these plans, it was Christmas time and Hal had regained his weight and more, and voluntarily put himself on a sensible eating program.

A good way to monitor your own emotional progress is by keeping a journal of your experiences in your life and dreams. You’ll see improvement as you re-read. Yes, I do know this is the third journal I’ve suggested but you won’t regret doing this. This is a rebuilding time. You are preparing yourself physically and mentally to be responsive to the doctors treatment. Check back a month or two and you’ll see on paper just how much you’ve grown and strengthened in your way of living.

Self- help groups sprouted like toadstools in the late sixties and early seventies and they have gained credibility with many doctors treating cancer patients. In Toronto, when we were learning the ropes, Alistair Cunningham, a professor of medical biophysics at the University of Toronto and former cancer patient, established the best-known groups. He ran the groups at the Cancer hospital where Hal went for his clinic visits. At first the groups were intended only for the person with cancer but the caregivers made it clear they were coming and staying, so they became part of the program.

The groups certainly had value for many of the patients attending; they had an opportunity to talk out their fears with their own small sub- group in the care of a trained leader. Each session lasted two hours a week for a period of six weeks, and you could move on to the intermediate and finally senior stage.

The sessions begin with a relaxation exercise, and I never ceased to marvel at the tightness I brought into the room and felt it melt away as the exercise progressed. Afterward, we broke into small permanent groups for an hour. The caregivers had their own group.

The caregivers benefited from the group as much or more than our husbands did; we gained a lot of strength from it and that indirectly helped the spouses.
We had questions we didn't want to ask in front of our spouses, about future obstacles we might face. Fortunately our group leaders were always generous with their time to take phone calls or meet privately for a few minutes after a session, to answer troubling questions.

To all caregivers reading this, if your partner isn’t interested in joining a self help group, find a group for you; you both need it but you in particular need a place to let loose. After all, your partner has more opportunity to express himself but you don’t.

My first and only surprise when we joined the group was the attending couples in bad marriages. Their incompatibility quickly became obvious. I wonder if one or both got anything from being there.

Here’s a note about helping your partner—if you are on heavy medication such as morphine, stop driving the car. Never once did a doctor mention this obvious fact and during support group sessions, we all discussed the close calls we’d had because our mates weren’t aware that their senses were dulled. Wives never seem able to tackle this one. Seek out a doctor, or in our case, a visiting nurse, who did lay down the law.

continued in chapter 9: part 4

chapter 9: part 2

2007-08-23T03:51:00.000-07:00

continued from chapter 9: part 1

Never ever permit yourself to feel helpless; do whatever it takes to stay in control. There are many ways to help yourself and you’ll have thought of many I hadn’t mentioned. This is your own personal pep rally; just think about choices you can make; you’re reading up on your cancer, you’re asking questions and you’re proving with each step you take that you’re not ready to leave your life in the hands of others.

Until someone can prove differently, medical treatment is the first and best line of defense but you can augment its effects and strengthen your body’s natural defense mechanism with a variety of mental techniques and approaches. Stress promotes disease. Nothing you do for the better is guaranteed but it’s never too late to get rid of bad habits and outmoded behavior patterns.

Victor, a member of one of our support groups, was a thirty- something man who hadn’t been married for long before his lung cancer was diagnosed and he lost a lobe to surgery. He gave himself a few days to rest at home, then he began walking up and down the stairs, just enough to feel the pressure, but not enough to sap his strength. Slowly, he worked his way from the stairs, to walking from the door to the sidewalk and finally to jogging, taker longer and longer strides. He was last seen taking a bicycle tour in Europe.
He was always a fitness-minded person, and even though there are signs of cancer in the other lung, he firmly believes that as long as he feels well, he will keep up the exercise and keep his body toned. His attitude will keep him going for a long time.
I hope you’re feeling good about the things you’re doing for yourself and yet you may be thirsting for more, so then reach out further.

We were encouraged by Doctor Bernie Siegal’s excellent books and we received “success” books from friends. We'd looked into the secret serums and miracle cures and magic diets and quickly rejected them. What else?

Sort through those self-help books and pick out the things that you can relate to; most recommend various mental exercises to promote a feeling of serenity and calmness. Gift yourself with some quiet time daily for quiet contemplation and centering. You begin with deep breathing and then you focus your attention on the spot between your closed eyes, sometimes called the third eye. Scan your body for tension. Begin with the top of your head and work your way down to loosen the tightness. Quiet the mind. There is no right way or wrong way. You want to feel comfortable and relaxed and your mind is at peace.

Do you laugh easily? Work on that. Your immune system likes laughter and you want to give it every break. We both got through a lot of tough times by using humor; we poked gentle humor at our situation and we searched out book, films, theatre, anything that would make us laugh, including friends who made us feel good and shared our kind of humor. One winning choice was the purchase of the Fawlty Tower tapes; they could always make Hal laugh, no matter how often he saw them.

Do things you enjoy. Read, walk, play tennis, visit the museum, libraries, the park, auctions, the list is endless. This is important-when you go to bed at night, play back your day and savor the things you did to reach out.
What sort of experiences and events have you been curious about but you were saving to explore during your retirement? Start now, pick away at it.

We gravitated more and more toward pleasurable things, in work and recreation time. Hal was wildly enthusiastic about the new house we would soon be moving into and spent hours poring over the house plans for furniture placement. We had too much furniture from those years of auctions and we worked on a room- by- room plan of what had to be sold, and still, we took too much with us. He was confident that his doctor was monitoring his condition carefully, he was careful to exercise and get enough rest and he was cheerfully looking forward to arranging the new house.

Here’s an exercise my friend Matthew practiced each morning. While he was brushing his teeth, he’d take a good look at his face in the mirror and then began a dialogue with himself. “Hi face, you look pretty good this morning. Today we’re going to meet anything that comes with the serenity that we feel deep inside.” Sure, it’s nutty and you’d be embarrassed if anyone saw you at this, but you are the most important person in your world right now and that face in the mirror has to be a valuable friend to get you through.

continued in chapter 9: part 3

chapter 9: part 1 SELF -HELP

2007-08-22T04:26:00.000-07:00

continued from Chapter 8: part 8

It was always clear in our minds that Hal would combine his medical treatment with self-help but first we had to find out what that meant. A positive attitude? More than that? We didn’t know.

We thought a lot about the doctors’ view of when to begin treatment. The doctor's credo seemed to be, "If it ain’t broke don't fix it." Well, it wasn't showing signs at the time, but it was broke. Now I realize they were leaving Hal alone while he felt well to enjoy his life.

We left our casual drop-in group to join a more active group run by a psychologist in the cancer hospital. Originally it was set up for the patients only but the facilitators claim the caregivers showed up the first night and refused to be left out. Through the new group we discovered various self-help techniques such as positive imagery where you imagine yourself into getting well.

We were always openly curious about the way things work and it was natural for us to ask questions and search out other people who were learning to deal with their cancer.
Not everyone is able to publicly bare their private selves; they are anxious to maintain control and help themselves, but they want their privacy. If you’re one of these people, you’ll find ideas in this chapter about what you can do to help yourself while maintaining your privacy.
Privacy wasn’t a big issue with us but we were clear that we had to make some changes while Hal felt well.

A lot of personal house cleaning happens when you connect with cancer. You may have already begun by discarding outmoded habits that are no longer useful, replacing them with new habits that will benefit your health and your feeling of self-esteem. You’ve placed yourself in the hands of a medical team, you may have a partner in place and you may have told some or all of your friends about your cancer. You may also have begun attending cancer group meetings or informal drop-ins. You’re taking a closer look at relationships that give you pleasure and also pain.

A few of our new friends in the group were avid about following macrobiotic diets and the two I knew personally were walking promotionals for it. They shuddered at the taste and blandness but believed it was aiding them. Hal chose not to attempt that because he liked his evening rum and roast beef didn't make the diet list. You have to be totally committed to anything to make it work, and no matter how much you want to succeed, you have to know yourself and your limitations.

Faith healers were not a serious consideration for Hal. He never claimed a spiritual life.

You can make further advances by concentrating on the foods you eat, ensuring they provide you with the best possible nutrition, by doing daily exercises that suit you, taking proper medication, getting enough rest and relaxing your body and mind through whatever is your relaxing agent. Learn to “listen” to your body. Follow the basic nutrition guides and if the combination of two foods causes an upset, make a note to eat them separately, or eliminate one as long as you balance the nutrients some other way. If you go through loss of appetite and feel a slight urge for food at three in the morning, ask your partner for a small milkshake or whatever you can handle and that can be produced quickly.

continued in chapter 9: part 2

Chapter 8: part 8

2007-08-21T07:50:00.000-07:00

continued from chapter 8: part 7

Volunteers are easily identified by their stand-out uniforms and you'll often find them pushing carts with tea, coffee and biscuits. They'll stop to help you find your way through the corridors and clue you in on any short cuts around the place. They also seem to have an unwritten law that no matter how edgy patients may get waiting bone-weary times to see the doctor, volunteers will treat them with unfailing tact and kindness.

About parking. It costs you to leave the car in the vicinity of the clinic, right? Well, usually, but not always. It's worth your while to scout the area by car a day or two in advance (Sundays are best) to see where the meter-free places are. I found a street nearby that had two-hour meters, and I never got a ticket, and frankly I didn't feel I deserved one. Consider the extra walk a good form of exercise.

And there's attitude. Yes, you do need to develop a positive approach to this new experience. The first time we came to the clinic I was worried about what I might see. I think my mind had regressed to those childhood films about leper colonies and civil war horror hospitals.

Would I see masses of bald, ghastly pale, quivering people who might collapse on the floor in front of me? I knew there would a pervasive feeling of sorrow.

Wrong. In reality it's more like the average crowd in a hotel lobby. There are skinny people around if you take the time to search them out, but the normalcy of the place is what strikes you first. The worst thing I ever saw was a big clump of human hair on the floor by my feet. Big deal; so think of the times you saw the same thing in the barber shop when your kid was overdue for a haircut. And it does grow back.

A good sense of humor can get you through anything. If you haven't got one, skip this part; I'm not sure you can fake it. We polished up our Gothic humor, which does seem to come with the territory. We used to play a game to see which person in the waiting area had the cancer. We guessed wrong countless times because the caregiver partner was often the one looking pinched and worried and neglecting his or her health. We also tried our hand at diagnosis as we got more sophisticated; what kind of cancer does the man in the brown suit have? If you practice your friendly approach you'll find out; we never met a patient who was shy about discussing the matter. Look, what else is there to do? This isn't the time to concentrate on anything more intellectual; you want to keep your main focus on your coming meeting with the doctor.

One of the "best" clinic visits we had was when I made a discovery out of necessity. Hal's legs developed blood clots and this coincided with his regular clinic visit. He couldn't walk without help and I was trying to figure out how to manage when I got to the clinic.

I pulled the car up to the driveway entrance and an attendant hurried forward with a smile. "Hello their little lady, need a wheelchair?" he asked as he opened the door. Now in normal times a person addressing me as little lady would receive an unladylike reply but I was so grateful for the help he could have got away with practically anything. He produced a chair and had Hal tucked in and wheeled inside the lobby while I parked the car in a lot across the street. And yes, this time I paid.

Instead of the usual way of slowly working our way through, we had a great time zipping through the corridors and people even held elevators for us. We got a good-sized examining room with extra chairs so that we could spread out while we waited for the doctor. Oh joy. On a day that your partner is particularly weary, try to round up a wheelchair at the clinic, to travel with more comfort.

Plan your clinic visit carefully, consider what you'll take, what you'll wear, food and medication to bring, your diary of symptoms and questions and most important, bring your peace of mind.

CHECK LIST FOR CLINIC OR DOCTOR VISIT

DOCTOR notebook with questions of the day written out and space left for answers.

DIARY to record in chronological detail every step of your diagnosis and treatment. This is your own personal medical chart.

DRESS for comfort and easy clothing removal and bring an extra sweater for warmth during wait in examining room.

MEDICATION. Be sure to bring some extra in case of delays.

READING MATERIALS. Bring games, cards, anything to pass the time.

SANDWICHES, a thermos of coffee or juice, just in case.

EMERGENCY KIT. Be sure the emergency barf kit is in place in the car.

MONEY. Have change on hand for parking, vending machines and phone calls.

CARRYALL. To hold most of the above.

continued in chapter 9: part 1

chapter 8: part 7

2007-08-20T06:36:00.000-07:00

continued from chapter 8: part6

Now we come to an essential item, how to carry all these essentials you bring along for doctor visits.

The first time you arrive at the clinic you'll swear you've happened upon a haven for bag- people seeking shelter from the elements. The men are less guilty of this but everywhere you look, people are clutching plastic bags that easily slip out of their grasp if they're juggling more than one. Stuffed inside, if you cared to look, would be some of the things I am going to list for you.

Here's what you do. You seek out a store selling light-weight canvas or leather bags of all sizes and you invest in one that can be carried without embarrassment by either man or woman. Make sure it has compartments, preferably one that is water proof in case of spills. Memorize your packing method so you can put your hands on whatever you want without unloading the whole works. When your name is called for whatever step comes next, you'll be better prepared to repack the paper backs and thermos without flustering with the plastic.

There is a always a cafeteria where you can buy food but in case you might be pressed for time to get to the next test or examination, bring a sandwich, fruit and a drink. There are lots of places to sit and eat, and in a cancer hospital, chances are people will smile at anyone showing an appetite.

Boredom comes hand -in- glove with these visits. We always looked around first to see anyone we recognized from other visits--we cared that these people kept coming back. That meant they were okay, as Hal was. Bring along a book or two, preferably light reading. I brought paperback mysteries and Hal the computer junky often brought computer manuals. (These were the early-on computer days.)

Hal also always carried a notepad and pen and often thought of work-related ideas he immediately jotted down. Trivial Pursuit cards can get you through; you don't need the board, just quiz each other, and sometimes you can interest another bored couple to join in. If you do come unprepared, use the time to practice your now more outgoing personality and deliberately chat up the others waiting with you.

If you want to be a sport, bring an armload of the magazines you are finished with; we're all familiar with waiting rooms so you'll know why your act is a kind one. Take a few minutes to re-check the questions you will be asking the doctor, and don't even consider leaving anything off just because you haven't anything else to do. Keep the questions intact because you had a good reason to put them there in the first place.

continued in Chapter 8: part 8

chapter 8: part 6

2007-08-17T06:33:00.000-07:00

continued from Chapter 8: part 5

We learned never to leave the house without bringing along a couple of extra doses of medication, in case we were delayed getting home. We found small plastic containers with snap on lids, resembling baby food jars, to carry Hal's liquid morphine whenever we went out in the car, and juice or ice water for the dry mouth that often follows chemotherapy.
These were the days before those handy juice boxes.

Your medication may change frequently, so you might be wise to carry your pills in their original containers rather than putting the current dosage in those flat plastic pill cases you pick up in the drug store. This is not the time to confuse your medication and if you happen to be on pain killers, it is possible to get muddled.

You may be fortunate enough to breeze through chemotherapy with minor discomfort, but just in case, store some readily accessible some barf bags in the car where they're readily accessible. A clean top or sweater is advisable in case of need. Fortunately we never used them but we were glad to have them along.

You can always spot the clinic first-timers by their clothing. They dress without regard to the effort involved in getting those clothes back on without anyone to help zip up that long back opening or do up the fifty- four buttons. They nervously make comments about the taste of barium before the CAT scan, they don't carry reading materials or medication and complain about the waste of time and what might be going on at the office without them. All valid problems and worries, and after a while they'll settle into routine and recognize the value of overcoming this new challenge.

Hal prepared by dressing for comfort and ease; he wanted to slide up the sleeves for blood tests and undress easily for his examination. He'd change into a short robe while waiting for the doctor and because those waiting rooms often felt chilly, we brought a cardigan or two to cover his legs. His feet were comfortable because he had a lifelong passion for Wallabies, a shoe intended for casual wear only. I'm grateful he didn't know about them years before when we were married in a formal ceremony.
The point is, he was comfortable in those shoes, and his legs didn't tire.

I quickly learned to dress for total comfort, leaving me free and unencumbered to concentrate on Hal's needs. As time wore on, I gave up the nylons and coordinated outfits and wore pants, sweaters and sneakers, my house uniform.

continued in chapter 8: part7

chapter 8: part 5

2007-08-16T07:01:00.000-07:00

continued from chapter 8: part 4

You're thinking about the kind of impact you're making on the medical people caring for you and you're working at making this successful. The remainder of this chapter will give you step-by-step help to guard against the boredom and frustration that are often a part of clinic day or doctor day; whichever system, these rules will still apply.

Rule number one gives a quick pay- off by ensuring your peace of mind. If you live in the same city as your treatment centre, arrange to come in for any tests a couple of days before your doctor appointment, so that the results will be in his hands by then. Otherwise, nagging at your consciousness is the unsettling question: did something bad show up on the tests? You might have to wait up to six weeks for your next appointment before you get the answer. If you can't come in ahead, arrange to phone your doctor or his designate for the results at a prescribed time. You have every right to be forceful about this.

We learned this lesson the hard way when Hal's day-of-clinic Ex- Rays indicated a spread of the disease and we didn't learn of this until the next visit, when the doctor mentioned it casually, as if we already knew. Now Hal didn't miss out on essential treatment because of the delay, but we lost that feeling of control and trust for a while, and that feeling can't be allowed to happen. When did the doctor learn of this? Wasn't it important enough to tell us immediately? Or did it matter in the long run? It did to us.

Next, on clinic visit day, don't make lunch or business appointments because you can count on being there for anywhere up to three hours. On the first visit or two, you'll be busy memorizing how to get from ex ray to blood tests to examining room, but once that's done, you become one of the regulars and you'll probably find yourself fighting both anxiety and impatience.

Go out and buy a couple of lined notebooks, like the scribblers you had at school, or the hard cover blank- paged ones in the book stores. These will be your medical records. Label one book, "DIARY", which will be a brief chronological report beginning with the date of your diagnosis, all treatments and tests that have been done to date and any significant changes in your health. To make it easier to read, get a book with a margin for the dates of each entry. At the same time, beginning with the back page and working forward, keep track of every prescription and whether the drug is still being used.

In Hal's case, after his surgery he felt wonderful, returned to work and didn't have another serious symptom for almost seven months so his book would have been pleasantly bare for that time, if we'd had the foresight to use this system.

Book number two can be labelled "QUESTIONS" and is intended strictly as preparation for the next checkup. In this book you transfer in exactly what changes have been recorded in book number one since the last visit and then list every question you want to ask the doctor. You don't think you'll forget to mention important things, but in the heat of working your way through the various tests and departments, you may need to refresh your memory. Be sure to bring this book with you. Give it a name and don't leave home without it. Don't be afraid to take the time to jot down some answers, and again, use team work and decide in advance which one of you asks the questions and which one writes down the replies.

What you're doing is keeping your own chart of your cancer and if at some time you are confined to hospital, the two of you can keep better track of what is going on by doing your own charting. You may be reminded through those pages of some medication or treatment that worked for the same symptoms in the past and you can ask about trying it again. In all fairness, you can't expect the doctor to re-read each page on your ever-growing chart and you have a vested interest in keeping involved. If you don't feel up to it, your partner is there to help.

I have a friend with Hodgkin's disease, and from the onset, she has requested and been given copies of all her test and ex ray results. She has even been able to show her doctor, through graphs, which medication works best for her. You can be sure her doctor re-reads his notes before tackling her.

continued in chapter 8: part 6

chapter 8: part 4

2007-08-15T06:43:00.000-07:00

continued from chapter 8: part 3

Hal expected that his reporter listening skills would be an advantage to establish rapport with the medical staff but he hadn't counted on the Catch 22 of clinics; you won't a;ways see "your" doctor each visit.

The Oncologist has a back-up team of qualified residents who share the assignments, so you never know until clinic day which one you will be seeing. This can be a big obstacle, doubly so if you're not prepared for a substitute and you'll want to think carefully about what you want to accomplish with the doctor of-the-day. This system calls for more flexibility on your part and you may have to adapt your personality to fit theirs to get the best out of the visit and to ensure that you understand one another. Too manipulative you think? You're shedding the no-longer-useful parts of your personality in order to gain this doctor's concentration on you and on your health and welfare. You're not going to change their system, but you have total control over the person they are treating.

Our first clinic visit to the cancer hospital was traumatic for me; Hal never expressed any emotion about it; he behaved matter-of-factly as though this was the next job on the agenda, so let's get on with it. You simply must forget the notion that you walk to the desk and announce you have a two o'clock appointment with your doctor. You might also have an appointment with the haemodialyses lab for the usual blood sample, or you may have an appointment for an ex ray, or a c.a.t. scan. or whatever. You will wait, that you can count on.

It begins the same way: you will check in at the admitting desk, then your file is pulled and sent to whichever clinic area you will be in that day. On Hal's first visit, a volunteer took us off to one side and offered coffee until he was taken in the admissions office to fill out some forms. His photo was taken and stapled to the back of his file, which was a practical way of comparing any changes in his appearance from visit to visit.

Next, the volunteer collected a batch of us newcomers and took us upstairs to the examination clinic. We sat in a crowded holding area and looked carefully around at our companions. Some of them looked skinny, some were in wheelchairs, some women wore those head covers, but by and large, it looked like a normal group. A volunteer called Hal's name and he went around the corner for a weigh-in. She told him his weight in metric, and when we converted it later, could see that his weight was up, probably ten pounds more than he liked.

The holding area is like being with family. You see familiar faces and there is an air of patience; we understand that delay mean one of us is getting special attention because it's needed. One day, you may claim that extra time, and for now you'll try not to begrudge the extra wait.

Eventually it will be your turn and the nurse will direct you to an examining room off the main corridor. Your job is to be thoroughly prepared for your doctor visit. Your trump card is the diary you bring with you, that I will describe in another chapter. It's also your backup system. During our first clinic visits we sometimes went home feeling dissatisfied, and when we analysed the visit over a cup of coffee we realized we hadn't asked the right questions. It's hard to know which question to ask. That's where the diary comes in. We always found that the doctor-of-the-day was unfailingly patient about answering questions and if we had known enough to bring the notebook with us, we would have been so much better prepared. You will have reviewed your questions in the waiting area. Using this method is the best of teamwork and chances are you'll leave satisfied that you've been heard.

continued in chapter 8: part 5

chapter 8; part 3

2007-08-14T06:31:00.000-07:00

continued from chapter 8: part 2

Hal was aware of the need to stand out from the crowd and his nature was probably like most of the people reading this book. It wasn't in him to deliberately break rules and he was the sort who either waited his turn in line or walked away to find more immediate things to do. He wasn't shy, though, and his personal style was to circle through a room and introduce himself to everyone. He was a casual person and preferred people to use his first name, but his doctors were decidedly uncomfortable with a first- name basis and he never managed to break down this barrier.
His amiable nature earned him respect on the frequent admissions to the general hospital next door.

Now it's your turn. If you're not too sure about how to get your share of attention try returning to successful tricks from your school days. If you weren't the smartest kid in the class, you didn't make the first string on the rugby team and you were not chosen class valedictorian, how come anyone knew your name? What did you do then? Chances are you compensated with your off-the-wall sense of humor, or your striking manner of dressing, or your ability to dream up the best ideas for fund raising for sports uniforms, or your habit of being thoroughly prepared so that people could count on you. Perhaps you were simply a good listener, and I'll bet you knew the names of most of the people in your school. Now, having re-lived the better part of your school days, take the best of these survival techniques and apply them to this new learning experience and make it work. You can go to the head of the class on your second go- around.

Your personality has changed while you've been working at the business of staying alive and making every minute count. By now you might be feeling pretty good about yourself and more confident with this new life style you're developing. You know what kind of person you want to be for the rest of your life, and, think about it, what have you got to lose?

An important way to develop a stand-out personality and be comfortable doing it is by practicing. Chat up the nurses, help pass the tea from the volunteer cart, and if it's your style, try addressing the doctor by his first name; either you will get results or at the least you'll have made some kind of contact. You'll know your practice is paying off when you greet patients you remember from other clinic visits and they show pleasure at being noticed. You can be sure they'll remember you the next time. Feels good, doesn't it, and that's what this is all about, feeling good. You're shaping another positive power you've always had but it's been dormant until now. Your name and face are emerging from the anonymous crowd. You are finding it easier to greet strangers and exchange information. You are taking control and you know that these strangers are your friends and they wish you well.

continued in chapter 8: part 4

chapter 8: part 2

2007-08-13T06:33:00.000-07:00

continued from chapter 8: part 1

Hal made his living as a writer by expressing himself in clear terms. He expected that these skills would be an advantage to establish rapport with the doctor but he hadn't counted on the Catch 22 of clinics; you won't see "your" doctor each visit.

The Oncologist has a back-up team of qualified residents who share the assignments, so you never know until clinic day which one you will be seeing. This can be a big obstacle, doubly so if you're not prepared for a substitute and you'll want to think carefully about what you want to accomplish with the doctor of-the-day. This system calls for more flexibility on your part and you may have to adapt your personality to fit theirs to get the best out of the visit and to ensure that you understand one another. Too manipulative you think? You're shedding the no-longer-useful parts of your personality in order to gain this doctor's concentration on you and on your health and welfare. You're not going to change their system, but you have total control over the person they are treating

The all-time champion of the getting-to-know-you assignment was our friend Michael, a tall temporarily bald man exuding the joy of living. He knew his cancer was the ultimate challenge of his life and he made himself recognized by sheer force of personality; I doubt that anyone in the clinic failed to recognize this man and he had the ability to make everyone smile. He sometimes covered his head with a large red felt hat with sweeping feather and he had an ability to remember names. His enthusiasm even carried over to the treatment he had chosen and the way he planned to tackle it. He didn't mind asking questions that might be construed as naive; he wanted to overcome his cancer and he wanted the best help he could get. He asked questions of every technician, and when he came in for his prescribed treatments he managed through skillful means to surround himself with the people he considered the best in their field, and if he felt that way, his chances of succeeding were going to be improved.

Then there's Claude; a witty, intelligent man. He'd come in for his chemotherapy reeking of marijuana, considered by many to be a helpful relaxant before treatment. He insisted on checking everything that was going to be injected into him, was knowledgeable about the entire process and wasn't shy about saying so. He also used various non- traditional methods to control his cancer and he talked about it to anyone who would listen. He was charming and earnest, opinionated and sometimes abrasive, but oddly likable. His way was slightly bad-boy off- the- wall and it worked for him.

Sarah was a favorite of mine, and there were many women like her. She didn't enter a room, she swept in and took it over. She wasn't particularly pretty, but she was striking. She wore a vivid, shoulder length red wig, with a scarf knotted through as an accent but certainly not to hide it. She favored well tailored suits topped by dramatic capes, and she was unfailingly charming while claiming as much of the spotlight as she could get. No one resented her behavior. She passionately wanted to live and to be noticed and she was succeeding.

Some people achieved recognition by sheer anger;loud, demanding, raising their voices at the slightest provocation. They too are remembered and get attention, if only to get them through the system and out the door. They were using up their precious energy in a negative fashion, and while staff members understand that rage is often a mask for fear, you'll benefit by trying a more positive approach.

Some fellow travellers send letters of appreciation to the doctor and technicians, as well as Christmas cards and gifts. I don't recall anyone getting better marks from the teacher this way, but if you're shy, try it and chances are your name and face will be remembered. Also, it’s nice to be thanked.

continued in chapter 8: part 3

chapter 8:part 1 CLINIC VISITS

2007-08-10T08:34:00.000-07:00

continued from chapter 7: part 4

This is about clinic visits----or---HOW TO GET YOUR NAME IN LIGHTS

The most efficient way to process a huge volume of cancer patients is through the clinic system. If you are living in a smaller area you may be relying on regular visits with the family doctor and perhaps interspersed with occasional clinic visits. The philosophy is the same so read on.

Imagine an unbroken line of men and women slowly winding their way through miles of hospital corridors and at last winding their way back out to the street. This is a metaphoric picture of your life for the next while. When you become part of this human chain you may anxiously wonder, "How will the medical staff ever get to know me? ", which really means, "How do I know I'll get the best care?"

This becomes your next assignment: making yourself known, or, ta- da, getting your name in lights. It's about getting to know the medical staff and for that matter, others around you. Does it really matter whether anyone gets to know you? You bet. What comes to mind when you read about a person " fighting for his life "? Do you have a picture of an unconscious form on a bed surrounded by doctors and machines? Well, here you are, on your feet, and you're fighting hard for your life, doing it one step at a time. I firmly believe, with some medical evidence to back me up, that every positive step you take prolongs your life. That's how you fight for your life. Getting medical people to know you means you're a special face in the crowd, with a name and a personality. If the doctor knows you on sight, chances are you're going to feel more secure about your care. If you’re shy and so is your partner, then make sure you show your best side. Polite, firm about your needs and providing concise factual reports.

This isn't the time for you to slide into passive behavior. I'm not suggesting that you regress into an arrogant demanding monster, but demand your fair share of attention. The payoff is that you'll feel more confident. You are dealing with the clinic medical system on your own terms and you're making it work for you.

continued in chapter 8: part 2

chapter 7: part 4 Who Do You Tell?

2007-08-09T09:21:00.000-07:00

continued from Chapter 7: part 3

Once the word was out friends relayed to us any positive information they had about his disease. A lot of our friends are writers and researchers and some automatically set to work investigating, bless them. None of them felt shy about asking for details and I clearly remember one man, renowned for his writing on medical subjects, asking Hal to bring all his medication to the phone to read off the labels to him. Hal basked in the outpouring of affection and caring he was hearing from his peers.

The best thing for us about spreading the word was that many friends made a point of phoning regularly to chat, or meet Hal for regular lunch dates as well as keeping us supplied with anything new they'd learned about the research going on.

On a couple of occasions he was astonished to learn that close business clients also had fought through cancer. One woman told him she'd had a mastectomy three years before followed by radiation treatment and he never knew. Thinking back, he remembered he lost touch with her for a long while and he thought that she had tired of his work and had found other writers. In reality, she had been in treatment and chose to keep her cancer private, and that left him believing he had failed. Another client confided that he had been written off twenty years back with a form of bone cancer and he was doing well, with no trace of the disease.

This is the real benefit of going public. You learn in your own small circle just how many people are on close terms with the disease and are living good lives despite this intrusion. You're suddenly part of an enormous community of positive people who savor every good moment of each day.

It did backfire once. Hal phoned my mother in Vancouver to tell her the news, once he was out of the hospital and feeling good.
She was naturally shocked and tearful.
A few days later she called when we were reading in bed.
I picked up the phone and she was weeping. I did my best to reassure her and told her how well Hal was feeling.
Pause. “Dear, will you be coming back home to live?” As in, when he dies.
She wasn’t fooled, after all her brother had died of liver cancer. Just the same, I wasn’t prepared for a conversation of that sort and I tried to make a joke of it and hung up as quickly as I could.
Hal heard enough to know what she had probably said and he was amused. I was not.

When you are taking treatment you will probably lose weight and look like hell and that's the time you run the risk of bumping into friends who haven't seen you for a while. Sometimes they will give a tight-lipped grimace passing for a smile and choke out, "You look wonderful". The more experienced ones who had either been through cancer or witnessed its stages through relatives or friends were more inclined to look knowledgeable and say, "Ah, you've begun chemo, haven't you?" That's O.K. Chemo can save your life.

The worst experience for us, unexpectedly, came from two members of the medical profession, both friends. This was about the time that Hal was visibly failing. First, a doctor friend came to the house to drop off work- related papers, took one look and visibly flinched. The second time it was a former nurse who dropped by; she wasn’t adept at hiding her shock and she had tears in her eyes.

If you're working on the should- I- or- shouldn't- I- tell conundrum, sort it through this way:
What are you afraid will happen if you tell? Sometimes you will see pity, or sympathy or sorrow or just plain relief it hadn't happened to them. Give your friends a chance; it's important for them to work their feeling through and at least some of them will give you strength and support when you need it most. Besides, you use up too much precious energy trying to remember who knows what.

If you want to maintain your privacy, then pull together a supportive and trustworthy group, so that you can sound off to someone. If you haven't got family or friends around, let go of some of that pride your pride and find a support group. Sharing your feelings can make you well. Swallowing all your fear and frustration can literally kill you.

continued in chapter 8: part 1

chapter 7: part 3 Who to Tell?

2007-08-08T06:46:00.000-07:00

continued from chapter 7: part 2

Some of the people in our support groups were such private people they found it tough even to be there, but came either because of the bitter loneliness they were suffering or their mates demanded it. For this small group the thought of going public would have caused even more emotional suffering.

Fiona found it tough when at first her husband Sean refused to let anyone know but the children because, "I don't want their pity." She is a gregarious person who finds strength in sharing the hard times with close friends but she was faithful to her promise. In time, he got over the first shock and opened up by first telling his brothers and much later he grudgingly agreed to tell his business clients. This risk-taking opened up a wealth of love particularly from his brothers. They showed their feelings and came closer together.

Rachael and Eric never considered secrecy. His company was understanding and encouraging and their friends were shocked but supportive. He was an athletic, energetic man and overcompensated by rushing back to his regular tennis games and later renovating the bathroom. there is this prevailing feeling,"If I can do all these things, then I can't be sick, can I?"

At first, getting used to hospitals and doctors and the news that your life is no longer yours alone is enough to handle. If you think back to your feelings when you learned a friends or acquaintance had cancer, you pretty well wrote that person off, and you have to face that some friends will write you off.

If you choose to talk about your cancer, you will risk people shunning you because they don't know how to treat you and wondering how you'll fit into dinner parties. I mean, are you going to ask for special foods at the last minute or worse still, not eat a thing while your hair drops onto your plate and will you talk cancer all through the meal? Will you sit there like a cadaver? Ah, all the unknowns.

Berry said that friends she believed would be close and understanding couldn't come to see Ronald while he was recuperating explaining, "I wouldn't know what to talk to him about." That's the cue for the partner to ease this passage; be prepared to sit in on visits until they struggle to recapture their old relaxed ways.

Along with personal feelings, there will be general upsets from the outside world.
We had put some money aside to enlarge my study on the third floor and had arranged with a contractor that his architect would draw up the rough plans and also steer the details through the city hall committee of adjustment, for one thousand dollars.
After the operation, I phoned the contractor to tell him that we would have to put a halt to the plans and gave a brief explanation. He ignored my explanation and said the plans were done and I said fine, we'll pay for them.

The very next day he sent a lackey over to the house to deliver the plans and the man, with great embarrassment, asked for the full fee, immediately. Obviously they didn't want to lose out if Hal died.

They didn't fulfil the steps outlined to earn the fee and the plans were a simple outline of what was to be done without any specific details. He deserved some money but not the entire amount. I remember being angry at the moment, but I was so deeply stressed with worry about Hal I wrote the cheque.

continued in chapter 7: part 4

chapter 7: part 2

2007-08-07T06:42:00.000-07:00

Continued from Chapter 7: part 1

We kept silent about Hal's cancer until one of his first mornings home from the hospital when he went out on the porch to meet the mailman and he said, I swear,
"Good morning, I'm just out of the hospital and I have cancer." He continued on cheerfully about what type of cancer and how he felt good and planned to continue to feel that way. The mailman, to his credit, responded well.

I sank onto the hall stairs, opening and closing my mouth like a beached fish, silently working on what I'd just heard while he sorted through the mail.

Before I could even question him about being so public, the phone rang and he rushed past me and up the stairs to take a business call and I heard him tell his client exactly what had happened and that he was mending very well indeed.

I remained on the stairs and thought about this for a moment. Okay Hal, it's your life and your career and if you want to be the totally up front person you've always been, then that's the way it will be. You may lose some clients but we'll take this a step at a time. Now I'd better tidy up the subterfuge.

I called the children to say the vow of secrecy was over and then called our friends to say that I'd been less than honest with them up to this point. That was tough. Some of them didn't know what to say and just spluttered, and others cried. Cancer certainly does not have a good reputation.

I felt a burden lifted from me and because so many of our friends are writers, and writers are naturally open and curious, they asked all sorts of questions and I felt even better speaking about the disease and the surgery as though it was just another occurrence in our lives. Life was still going on.

Hal's truthful attitude lost him the two new clients left stranded when he was in hospital but the remainder stayed with him. Even during the months ahead when he was in and out of hospital, some of them called regularly to say that when he was ready there would be work for him. This did wonders for his morale and I'll never forget their kindness in taking the time to make him feel a part of the living. Their attitudes set the tone and despite the problems that cropped up later, he never missed a deadline.

He continued to discuss his illness in a matter-of-fact way, never dwelling on it, just enough to say this is what has happened and I'm dealing with it very well, thank you.

My friend Berry had the experience I expected to have. Ronald imposed complete silence about his cancer, claiming people would feel sorry for him and the people at the office would never understand. Berry found it extremely difficult having to be cautious about what she said and she wasn't used to lying to friends, or anyone else. Eventually, as Ronald got more used to the fact that he did have cancer and he was dealing with it, he casually lifted the ban in an offhand way. He said to Berry, "Well, I guess it's okay if you tell the family, but that's all." Berry took a deep breath, stiffened all five foot one of her and said to her over six-feet spouse, "Ronald, this is a warning and an ultimatum. I will never, never lie for you again." And she never did.

continued in chapter 7: part 3

chapter 7: part 1 Who do You Tell?

2007-08-06T03:53:00.000-07:00

continued from chapter 6 part 8

Remember those movies when the spunky heroine kept her terminal illness to herself and tidily set about winding down her life without inconveniencing anyone? Real life is much messier. Did our heroine ever scream about the injustice of it all? Did she ever confide in anyone? Apparently a gentle cough was okay but an anorexic appearance would have been definitely uncool.

How do you feel about telling people you have cancer? What do you think they'll do? Shun you like lepers in the old days? Avoid you because they don't know what to say? Afraid you'll read pity in their eyes?

After Hal's operation, I was certain in my mind that we had to keep the news strictly within the family. There were a lot of what-if's buzzing inside my head and this seemed such a clear decision, so much so that I didn't even consider discussing it with anyone, including Hal. I simply asked the children to keep silent.

We told people his surgery was to correct a bowel obstruction.

I believed this was what Hal wanted and I made the decision while he was still groggy from the anaesthetic.

The big question was how would his clients react to the news. He loved his work and had said many times over the years that he couldn't imagine life without it. If that was the way he felt then I'd lie for him forever so that he could keep working, if he felt well enough to work. There was a time I talked idly of us settling in a retirement cottage somewhere warm and he'd emphatically snort that he had no interest in rusting out; he would continue writing as long as he could fasten his fingers to the computer keys. No retirement in Florida for this man.

I never thought of us as private people and there was little that we considered out of bounds but in this case I had to find a way to lie convincingly. Friends who knew he was in hospital believed, as we had, that he probably had Crohn's disease. After the surgery, when they called to ask how it went, the children and I answered vaguely that the blockage was removed and Hal would be out of hospital in a week or so.
It was perfectly clear in my mind that this was the correct way to handle the situation, so much so that it never occurred to me to ask for an update from the subject of all this attention, Hal.

continued in chapter 7: part 2

chapter 6: part 8 Study your doctor

2007-08-03T08:09:00.000-07:00

Continued from Chapter 6: part 7

We settled in quickly to the clinic routine and always came prepared.

An expression occasionally used by the doctor stuck with me, “When you get sicker.” That was the key phrase. When you get sicker.

On our first visit we rattled off our list of rehearsed questions and mentioned the test drug Hal had been offered. The doctor knew of it, of course. He was a factual and honest as he could be and he left us with the impression that when there is a break-through, he will be quick to act on it for his patients. I was reminded that the surgeon said to think of the Oncologist as a researcher above all, and when a breakthrough came, he would be only too happy to be involved.

Information and accessibility were important to us and we got that. We naively asked if the treatment he was considering for Hal showed that patients had ever gone into remission for five years or more. I don’t recall how he fielded that one but we didn’t get a definitive answer.

I again wondered out loud about Hal’s life expectancy when Hal interrupted, “Look, I will not permit anyone to tell me when I might die.”

Here was a change of direction. We had endlessly discussion the question of Hal’s life expectancy, but now Hal had made his stand. The matter was never discussed again and I know that would have been marked in his file.

We liked and trusted the oncologist from the start. We didn’t ask how long the planned treatment would be or whether there were other procedures that might be tried, but we didn’t doubt that hr would answer direct questions honestly and compassionately as Hal’s illness progressed. We left Hal’s life in his hands and we believed completely that he would do what he considered the best way to benefit Hal.

We did ask about a self -help group run by a Princess Margaret staff psychologist. The doctor sent along our names and the clinic got in touch with us.

That day, based on the man’s manner and professional approach, we made the decision to commit to this doctor and this hospital. We never seriously discussed the trial drug again and turned out concentration and attention to “reading” this most important person in our lives.

During all our visits over the months he never ever left the room until he was satisfied all our questions had been answered, and we never felt any impatience on his part, knowing there were other patients waiting for him. Hal liked and trusted him.

I can’t imagine how an Oncologist or anyone working where the mortality rate is so high, can lead a balanced life. Certainly, keeping patients at arms length is a start and concentration on the research is vital.

You won’t find a doctor who isn’t terribly busy, so forget that dream. We were heard and our questions were answered. The doctor gave us his office number and the name of his secretary and god bless doctor’s secretaries. They are a compassionate bunch.

This man had a limited humor, not unexpected, was all business, gave us his complete attention and was knowledgeable. To be sure, he would never have picked Hal out of a crowd, but we had found our doctor.

Now to begin.

continued in chapter 7: part 1

Chapter 6: part 7 Study Your Doctor

2007-08-02T07:30:00.000-07:00

continued from chapter 6: part 6

At last Doctor Roberts announced he was going to set up an appointment with the Oncologist at the Princess Margaret Hospital next door. Now we wouldn’t have been dumb enough to maintain ties with this man, but ask yourself whether a person like this would waste his time trying to prolong Hal’s life. I think not.

Three months to the day since his surgery Hal had his first meeting with Doctor five, the Oncologist. This was also our first experience with clinic visits, an experience like no other.

Kind volunteers ushered us through the first-time admitting routine until Hal was weighed and we were directed to an examining room. I had every intention of being with Hal and that turned out to be acceptable procedure anyway. The room was a decent size, with examining table, washroom, cupboards and sink. Hal stripped down to his underwear and socks and pulled himself onto the table. I sat in a chair holding his clothes, magazines, books and other necessities. We probably only waited fifteen minutes, and a nurse popped in once to say the doctor would be in soon.

We watched the shadows of passing feet under the crack in the door leading to the more private back corridor. Another nurse dropped in for a moment to let us know what the procedure would be and then a resident entered to do the usual testing and thumping and asking of questions and as always, in Hal’s case, came the rectal exam. I know he was sore from them but he never complained.

Finally, Doctor Edge arrived, accompanied by the resident and a nurse. My hands were ice cold. Here was the person who might be able to give us more of that quality time we kept reading about.

He was a stocky bearded man, crisp, articulate and smiling. He had the kind of erect body that appeared rooted to the floor. He introduced himself and was definitely not a person you would be on a first-name basis with. It became immediately clear that he had read Hal’s file thoroughly. He knew we were studying him as carefully as he was studying Hal. He talked about Hal’s kind of cancer and what he perceived as Hal’s condition at the present time. Hal said he felt well, had returned to work full time and found it hard to believe he had cancer.

The doctor told us he didn’t plan to begin any treatment while Hal was feeling well and while his weight was holding. We asked about something another doctor had mentioned, that they might consider surgically implanting an infusion pump near Hal’s liver, to mete out chemo drugs but Doctor Edge didn’t think this was the right course. He said that when the time came for treatment he would probably try chemotherapy by injection, a series lasting one week and then a follow-up six weeks later. We did ask how the doctor would know when to begin treatment and he said when Hal began to lose weight and complained of various discomforts.

continued in chapter 6: part 8

Chapter 6: part 6 Study Your Doctor

2007-08-01T06:58:00.000-07:00

continued from chapter 6: part 5

I realize now that Doctor Roberts was just marking time until we could see the oncologist but at the time he seemed as puzzled as we were about what should be done next. All he had to do was keep monitoring until the forthcoming appointment at Princess Margaret Hospital.

He got it in his head at our next meeting that he didn’t have enough information about the placement of the liver spots, although the surgeon’s letter to him, which he read out loud to us, seemed clear enough.

We were like lambs led to the slaughter. He ordered a venogram, a procedure to be
done in the Emergency Department on an outpatient basis. Dye is inserted in a groin artery and when the dye reaches the liver, it is Ex-Rayed.
On the day, Hal was given a tranquillizer and I sat across the hall from the procedures room, where he was taken.

Once, the door was opened, and I saw him lying on the table covered by a blood-soaked sheet. Arteries tend to gush. He was still woozy but cheerful when he was wheeled out on the stretcher. He was instructed to lie still for a couple of hours to be sure the bleeding wouldn’t resume again. The doctor came in and brought the plates with him and we looked at the tumors. They looked like bull eyes. So, now he agreed with the man who had seen the tumors first hand; the tumors were indeed too spread out to be successfully removed. And it was really necessary to put Hal through this exercise to give this temporary doctor his first-hand view?

Ironically, when Hal finally moved on to the next doctor, this Ex-Ray was lost.

continued in chapter 6: part 7

chapter 6: part 5 Study Your Doctor

2007-07-31T03:38:00.000-07:00

continued from chapter 6: part 4

Now we come to doctor number four. Between doctors two and four we are talking a matter of a few weeks from the time I drove Hal that first time to the Emergency Department until he was discharged from the hospital after his surgery.

I’m still fuzzy on this but I think this is what happened: the surgeon, Doctor Beam was about to go on vacation and the oncologist he was planning to refer Hal to was on vacation so in the interim Hal was to be monitored by Doctor Roberts, another surgeon. This turned out to be the darkest part of those first weeks.

On the day we met Doctor Roberts, we were ushered into the inevitably chilly, tiny examining room. Hal sat on the table and I perched on one chair, clutching our coats and other paraphernalia.

Enter the doctor, a medium size guy with trim body and a springy walk.

His first words were, “So, Mister Tennant, what can I do for you?”

Shucks, doctor, we had hoped you’d studied the report in your hand and would give us a little guidance.

Hal politely went through what had happened and that he was ready now for whatever sort of treatment he should be having. I made some comment about the cancer mestasisizing into the liver and worried about Hal’s chances, and this man, now sitting in the chair with his feet up on the equipment table between us, put his hands behind his head and said flatly, “Well, chances are he’ll be dead of cancer of the liver within two years.”

Of all the things that had happened in the past months, this was the lowest point. Neither one of us behaved badly; we heard the doctor out, he said he would continue monitoring and his nurse set another appointment for three week’s time. We left the hospital and got into the car. We just sat there looking at one another. We took a collective deep breath.

“Hey,” I said, “The hell with this barbarian. Let’s go have a super lunch.”

One thing you can count on is that I will think of food in a crisis.

We drove to our favorite Italian restaurant and were seated in a fairly secluded spot. We shared a bottle of wine and drank a toast to our future. We both cried a bit, then the wine did its job and we laughed and actually had a good time in that warm spot surrounded by lively, anonymous people. Afterward, we sensibly went home and made love.

continued in chapter 6: part 6

chapter 6:part 4 Study Your Doctor

2007-07-30T09:31:00.000-07:00

Continued from Chapter 6: part 3

We were shuffled around a lot before we actually met the Oncologist at Princess Margaret hospital.

First was Heather, our family doctor who struggled to find the cause of the pain. Was Hal behaving too stoically during his visits to her office? I don’t know because I wasn’t there, but from doctor number two and on, I was like his Siamese twin.

Doctor number two, Dr. Kroll the Gastroenterologist who admitted Hal from Emergency, was a pleasant, formal man who, like every doctor I met, worked long hours, but the person we saw most at this stage was the resident, Dana, and she was forthright. She drew a diagram of the intestines and showed where they thought the problem was. If we had asked her then what they might find during exploratory surgery, I believe she would have told us. We figured then that we had enough problems on our plate and settled for the diagram and the vague notion that this might be Crohn’s disease.

We got used to a certain ritual: when the chain of command altered and Hal was turned over to the next specialist, the previous doctor disappeared. We saw Dana at an elevator shortly after the surgeon took over and she looked blankly through us. We no longer were a part of her work schedule.

Then came number three, Doctor Beam, the surgeon who performed the operation and he was the most positive person we encountered; a person with that attitude is worth his weight in rubies. Because of his positive strength we raised our expectations about our needs and Hal’s rights. Because he was a surgeon, though, he wasn’t considered to be the person to take Hal further. He was the exception to the out-of-sight-out-of-mind rule; he never spoke in terms of writing us off and he maintained contact through Hal’s illness, having him come in every three months for a chat and a check-up. We appreciated those chats more than I can express.

Although the Oncologist took time to explain things to us, we sometimes left the clinic feeling upset and Doctor Beam, one step removed from our battle, had a way of soothing us and making everything seem clear, hopeful and reasonable.

continued in chapter 6: part 5

chapter 6: part 3 Study your Doctor

2007-07-27T06:25:00.000-07:00

continued from Chapter 6: part 2

Let’s take the worst- case doctor/patient scenario and say that the two of you can’t make a compatible fit, either in personality or confidence and you still want a referral. You have been doing all that research in chapter five and this is just a minor setback.
If you are sure in your mind that this doctor is one you simply cannot relate to or trust completely then take immediate steps to make a change.
You don’t have to change your name, leave town and start again.
Ask for a second opinion, and then call the family doctor or a medical friend if you have one. Do some auditioning. This takes considerable tact. It takes some time, but if you are making your selection from say, the same clinic, your file goes from doctor to doctor so you’re not starting from scratch.

Fiona told me of her experience on Sean’s behalf when they first began seeing his specialist at a cancer clinic in a general hospital. It was a shabby, drafty place and most patients were vocal, wailing and breast beating. Sean was an uptight, private person and this display of overt emotion upset him as did the dingy setting. Fiona knew this wasn’t going to work well for him. She got on the phone and called everyone who might know of a specialist who might be right for her Sean. She kept hearing the same name and believed this might be the right one. He worked from a hospital she was familiar with.

They arranged their appointment and when the doctor asked why they had come, Sean told him bluntly and honestly that he didn’t have confidence in either his present doctor or that clinic. Fiona sensed that the specialist was pigeonholing Sean as a difficult patient and he casually asked them to wait while he went away to review Sean’s files. She knew he was going to turn them down. She turned to Sean and said, “Look, he isn’t going to take your case; he believes you might be a trouble maker and he doesn’t need the aggravation. It’s your job to convince him that you’re a good guy. You may have to beg, but do what you have to do to change his mind.”
And he did.
Continued in chapter 6: part 4

chapter 6: part 2 Study Your doctor

2007-07-26T07:59:00.000-07:00

continued from chapter 6: part 1

You know the kinds of people you’re most comfortable with. Does it matter if your doctor is an autocrat and you are much more laid back? Not especially, as long as you feel the fundamental needs are being met. What do you care about? Do you want to know every change in your condition or would you prefer to leave the worrying to the doctor? We’ll take it as a given that you want to know you are in the hands of a total pro who will give you the best. Can you handle a starchy manner? If you are a formal personality, can you manage if the doctor establishes a first-name relationship?

Test your doctor as you go along; what makes him laugh? Is he controlling or does he keep you abreast of your treatment? If he walks into the room looking grim, do you infer that he is bringing you bad news about your condition? If this crosses, you mind, ask him.

For the sake of argument, let’s say that the specialist assigned to you has, in your opinion, the personality of a horses’ ass. You will never like him but you will probably respect him and you’re convinced he will give you the best care.
Figure out how you’ll handle your feelings; social skills don’t appear to be a prerequisite at medical school and generally you get lucky, but if your doctor’s attitude falls between the cracks, give a little there because this person is your best shot at recovery.

It will be up to you to adapt to his personality.

What might you do to establish a better footing? Well, the truth is a good idea but be gentle. You might say, “Doctor, I have a casual personality and you are formal. I want to work with you because I am convinced that you are the one who will give me the best chance. I am an up-front person, I expect the whole truth and good information about every step of my treatment but leave me a window of hope.”

Conversely, if you don’t want a blow-by-blow account, be clear that you are leaving the treatment to him, that you will ask when you want an update, and please don’t volunteer information unless you ask.

It is important to know that these doctors probably would never be able to pick you out of a line -up, so find your middle ground.

continued in chapter 6: part 3

chapter 6: part 1 Study Your Doctor

2007-07-25T03:37:00.000-07:00

Continued from chapter 5: part 7

My job was to persuade Hal to consider himself to be fifty- percent responsible for his recovery. His attitude and sense of purpose were the foundation of his rebuilding program. The medical profession shoulders the other half of this fight and since they’re going to be partners, choose your co-workers wisely.

You need a doctor who is thoroughly acquainted with your particular kind of cancer. This person is a human being like you, has other patients like you, struggles to balance a family life and work and somehow has to make you feel special and that you’re getting the best of what he has to give.

An important priority for me was that Hal’s doctor be flexible enough to permit me to remain in the examining room, always. I knew that Hal needed me and relied on me to be his second ears, especially important if a patient is on pain medication and may not always be sure of what was said.

This wasn’t a problem and you should be able to work this out if you play by the unwritten ground rules: keep quiet, stay out of the way and keep your emotions tightly reined in. This is your partner’s appointment and the focus must be clearly and finally on his health and problems. The rewards for me were boundless. I didn’t have to rely on second-hand information, which could have been hopelessly garbled when Hal began taking painkillers.

This kind of togetherness isn’t important to everyone, as is the case with my friends Beryl and Ron. She had always struck me as the kind of person who could take charge of anything anywhere, but she wasn’t like that at all. Ron took full control of the arrangements and appointments, from the start. She drove with him to his appointments and sat in the waiting room. This suited them. She said later, “Frankly, if I’d wanted to be there with him, Ron would have been demoralized.”

You owe your doctor clear, concise questions. If you the patient feel rotten, spend a few minutes beforehand to work out in your head what the problem is or where the problem seems to be. Pinpoint the area and the sensation. You will be expected to follow instructions about medication and diet and whatever else is necessary to help make you well or at the least, comfortable.

When you first meet the doctor who will be seeing you through this, your first instinct is to be damned grateful that someone is looking after you. Hold that feeling but also be clear about your needs. Your best instincts tell you that this person is going to be a part of your life for a long time, and it would be nice if the two of you were compatible. It is vital that you trust him.

continued in chapter 6; part 2

chapter 5: part 7

2007-07-24T06:38:00.000-07:00

continued from chapter 5: part 6

When I questioned the women from the support groups whose mates had cancer, I was surprised that many of them hadn't been present when their spouses met the specialist for the first time. Either they had jobs or their spouse insisted on being independent about this. For my sake, I am glad Hal accepted my presence. We all know that you can come from the doctors office believing you remember all you were told, but often that isn’t the case.

It was clear in our minds that Hal would combine any medical treatment with self-help imagery and group therapy and relaxation exercises and we left the casual drop-in group to join a group run by a psychologist in the hospital. This one was money well spent because they permitted the caregiver to participate. Originally it was set up for the patients only but the facilitators claim the caregivers showed up the first night and refused to be left out. This was excellent for us both.

We thought a lot about the doctors’ view of when to begin treatment. The doctor's credo was, "If it ain’t broke don't fix it." Well, it wasn't showing signs at the time, but it was broke. Now I realize they were leaving Hal alone while he felt well to enjoy his life.

We opted to stay away from macrobiotic diets that patients we've met swear by, and the two I knew personally were walking promotionals for it. They shuddered at the taste and blandness but believed it was aiding them. Hal chose not to attempt that because he liked his evening rum and roast beef didn't make the diet list. You have to be totally committed to anything to make it work, and no matter how much you want to succeed, you have to know yourself and your limitations.

Faith healers were not a serious consideration for Hal. He never claimed a spiritual life and to the end, he never wavered there.

This was the way we eased into our decision about Hal's treatment. We would follow the directives of the Oncologist and we would follow it faithfully. We would also practice positive imagery for self-healing, at home and within this group setting.

We could have been more aggressive before Hal was diagnosed and before he began treatment, but we weren't and I know we did what we believed was right and I can live with that.

I still get shivers when I meet people who figure the answer lies on the shelves of the health food store or in the third floor walk up where this magnetic person has all the answers, for a hefty price. This is a tough disease. Do your homework, get the right doctor for you and then commit yourself for the rest of your life.

May it be a long one.

continued in chapter 6: part 1

chapter 5: part 6

2007-07-23T06:42:00.000-07:00

continued from chapter 5: part 5

Once you commit to your treatment, you should be prepared to go the distance without worrying about what you might have done. You have agreed to this course of treatment based on your research, and now you can get to work on keeping your mind and attitude in top working order.

You have studied and questioned your doctor carefully and you believe through your research that this person is professional and knowledgeable and the choice of treatment for you is the best course to take.

We had a pretty clear understanding of the way the Oncologist wanted to manage Hal's cancer. Still, we had to be a part of that decision making process and so should you. We accepted the doctor's views immediately, but we had done our homework and were aware of many of the options open to us; we also had an abiding faith in the cancer hospital and clinic, based on its solid reputation. We also hope it would attract the most qualified people on staff.

The doctor didn't plan to begin treatment until Hal showed signs of distress and this gave us the opportunity to re-examine the information we had been gathering about various treatments.

We knew his cancer was serious and we had little reason to doubt that no matter what he did he would die of it. That doesn't mean we intended to passively accept that, we intended to fight the disease as hard as we possibly could and we did. Once we met the Oncologist and committed ourselves to his management of the disease we never discussed Hal's life span again and we turned our thoughts totally to today.

Cancer is not a straightforward disease; there is that cell splitting and metastasizing and comparing one case against another re treatment is tough. We knew that the chemotherapy proposed for Hal was his best bet. His was called 5-FU (eff you) or more formally 5-Fluorouracil.I always thought the name was ironically apt. He was vain enough to rejoice that this treatment seldom causes much hair loss and he kept his thatch intact. He would suffer from nausea and mouth sores and weight loss.

We felt a sense of being protected at the hospital cancer clinic and that was the main reason we chose not to try the experimental drug offered to us. From what we'd read one drug wasn't going to rid the body of cancer. Never at any time were we tempted to try any of the untested, unproved drugs, clinics and "doctors" who grow rich preying on people searching for answers.

My advice is to choose based on all the facts and information you can gather from reliable sources and then keep your focus on the present.

It was always clear in our minds that Hal would combine any medical treatment with self-help imagery and group therapy and relaxation exercises and we left the casual drop-in group to join a group run by a psychologist in the hospital. This one was money well spent because they permitted the caregiver to participate. Originally it was set up for the patients only but the facilitators claim the caregivers showed up the first night and refused to be left out. This was excellent for us both.

Faith healers were not a serious consideration for Hal. He never claimed a spiritual life and to the end, he never wavered there.

This was the way we fell into our decision about Hal's treatment. We would follow the directives of the Oncologist and we would follow it faithfully. We would also practice positive imagery for self-healing and we would do this in the privacy of group leading.

If you did this again, what would you change?

We could have been more aggressive before Hal was diagnosed and before he began treatment, but we weren't and I know we did what we believed was right and I can live with that. I still get the shivers when I meet people who figure the answer lies on the shelves of the health food store or in the third floor walkup where this magnetic person has all the answers, for a hefty price. This is a tough disease. Do your homework, get the right doctor for you and then commit yourself for the rest of your life. May it be a long one.

continued in chapter 5; part 7

chapter 5: part 5

2007-07-20T04:01:00.000-07:00

continued from chapter 5: part 4

Here is a sampling of questions you will probably want to ask your doctor or oncologist (cancer specialist)on your first visit, although this doesn't let you off the hook with your research. Compare what you're learned through reading with what the doctor replies. If the doctor's answers are confusing, have them clarified.

Most of these questions will be brought up by the doctor and you won’t need to ask but you'll feel better if you are over-prepared..

1: WHAT ARE THE USUAL treatments for my kind of cancer? Please describe in detail.

You may or may not want to ask this question: what is the survival rate with this kind of treatment? How long has this treatment been used?

2: WHY DID YOU CHOOSE this treatment over any others? What side effects can I expect and are there ways to combat them?

3: ARE THERE ANY alternative treatments in the works that you find encouraging?

4: I'VE BEEN READING about a treatment called (X) and it sounds promising. Why aren't you trying this?

5: HOW DO YOU TELL if my cancer has spread?

6: I WANT TO TALK TO SOME PATIENTS who are receiving this same treatment you are advising. How do I do this?

7: I UNDERSTAND EACH CANCER is identified by a type and stage. What is mine? What does that mean?

8: WHAT ARE THE TREATMENT RISKS in my case? I've heard that some people die from the after effects of the treatment rather than the disease.

9: WHAT ARE the optimal results I might expect from this treatment? How often have you seen this happen?

10: HOW OFTEN WILL my condition be monitored?

11: WHAT ARE YOUR OVERALL PLANS for my treatment based on what you see now?

12: WHO DO I CALL if I get into medical problems outside of clinic hours?

13: I MIGHT WANT to get a second opinion. Do you have any objection?

14: IF I OPT FOR a non-traditional treatment at this early stage, can I return to your care at a later time, if I feel it necessary?

There. You have taken matters into your own hands and you know a lot more about your disease. and chances are you feel more confident.

Now you’re ready to make your decision. You are armed with the right questions and you’ve noted the answers.

continued in chapter 5; part 6

chapter 5: part 4

2007-07-19T07:16:00.000-07:00

continued from chapter 5: part 3

During our research phase we investigated a controversial private clinic in Toronto which specialized in deep heat treatment combined with drug therapy. This was the clinic used by Mary, our first contact from our first support group. She was alive and well two years after starting treatment, receiving regular checkups with no traces of cancer showing.

chapter 5: part 3

2007-07-18T06:47:00.000-07:00

continued from chapter 5: part 2

The most intriguing information about cancer treatment came from our friend Jack. He called to say that his friend Harry ran a small independent pharmaceutical lab holding a patent on a drug currently being tested by a renowned doctor in Montreal. Hal talked to Harry, who was wildly enthusiastic about its potential. The major asset of this drug was that it was considered to be non- toxic, which means it won’t harm normal body cells and it was said to boost the body’s natural defenses.

The drug had been developed by a veterinarian who had satisfactory results injecting it into animals with tumors.

Harry said that one doctor in our city was permitted to inject this drug, once a week for five weeks and there were absolutely no after effects. The one criterion was that the tumors must be small so that they could be eliminated through the body. As far as we knew, Hal’s tumors would qualify for size and Harry offered to make the drug available to Hal at no charge.

I phoned a medical acquaintance at the hospital where I had previously worked to ask her what she knew about this drug; she checked with the Pharmacy Department and called back to say that while it was still in the early testing stages, it was being tested in Montreal on terminally ill patients.

I asked her, “ Look, I know the final decision is up to us, but if you had colon cancer with traces in the liver, what would you do?”

Her answer was, “Well, what have you got to lose?”

She was right. The appeal of a drug that doesn’t cut, burn and poison was huge, but what we were most afraid of, if we opted for this treatment, was that we would be out of touch with the cancer hospital and the oncologist we would soon meet. Somewhere I read a slogan I never forgot—“Not to decide is to decide.” Ultimately, we chose not to follow up on this treatment and years later when I searched for an update, it hasn’t proved itself.

Keep in mind that when a breakthrough for your cancer comes, your oncologist will be at the head of the line to get help for you.

Two of my new pals from a support group were Ellen and Curt. They had the most difficult time because there weren’t facilities equipped for Curt where they lived in cottage country. They had to endure a long drive into the city for his chemo and stay with their daughter while this was being done. Then there was the long drive home, when he would not be feeling good.

Ellen heard later that another friend with the same kind of cancer was given his chemo by capsule, and she feels bitter that she had never heard of this option.

This is where you need the information up front. Presumably a capsule was not right for him, but then again, could it have been?

They had been going to a hospital in the west end of the city, which meant they had to drive in from the country and right across the city. Added to this tiring fact, Ellen slowly began to realize she Curt had a doctor who had limited vision about cancer treatment and she finally asked that Ken be transferred to Princess Margaret, the cancer hospital and that was done.

She then felt she was getting him the best help possible.

continued in chapter 5: part 4

chapter 5:: part 2

2007-07-17T04:04:00.000-07:00

continued from chapter 5; part 1

Some treatments work better than others and many forms of cancer can be arrested for the rest of a natural lifespan. The reason I am stressing that you must get a lot of information on your own is that you will feel less helpless, more in control of your life. A happy outcome is that in your search you will meet people who are keeping their disease at bay while getting in a lot of living.

We were in limbo for a while when Hal was discharged from the hospital, the surgeon and oncologist were away and we were on our own. This was the ideal time for us to do our research. Friends, friends once removed, and family members acted as messengers, bringing word of various treatments. It was usually about a person no one knew personally who had conquered the tumors by non-traditional means such as faith healing, macrobiotic diet combined with mega vitamins, gurus, Laetrile, other drugs you’ve never heard of, coffee enemas, green algae and the list goes on. You will be urged to find out more.

This is good. Tiring and confusing but good. Adding to the confusion is that if you worked your way through even the nuttiest treatments, chances are you would locate someone who took treatment and appears healthy. My skeptical soul tells me that you could probably feel good for a while if you believed whole-heartedly that sunflower seeds dipped in molasses would do the trick. Some people opt for a combination of things while taking accepted treatment. We didn’t write anything off at first. We wanted to keep open minds while we sifted through the information.

The danger with unproven cancer therapies is that you might veto accepted medical treatment for your disease.

You’ll hear reports of wondrous results in far off country clinics out of the reach of Medicare, and if you manage to liquidate everything you own, you might be able to get there for your treatment. From what I’ve observed these treatments prove worthless, but desperate people still seek them out.

At the same time you are hearing these hopeful stories, pick up a newspaper any given week and you’ll read about a new treatment getting good results but still in the testing stage. This will motivate you to keep a positive outlook while you prepare for your treatment.

continued in chapter 5: part 3

chapter 5: part 1 Do Your Research

2007-07-16T07:21:00.000-07:00

Continued from chapter 4: part5
Think back to the last time you bought a car. Whether new or used, you probably did a little research and some road testing.

Well now, try being as meticulous about your cancer treatment. This suggestion might seem obvious but in the first stages of panic you might give way to despair without crediting your ability to study and analyze the situation and make good decisions based on what you’ve learned.

This is your life and it’s worth your while to put at least as much effort into researching your illness as you exerted in researching your last car purchase.

You know the name of your kind of cancer but what else do you know about it? Your doctor may have drawn a diagram and quoted some statistics about your chances of overcoming this, but go after more information on your own. This is the time to learn exactly the kind of treatments available and then to narrow down which one is right for you. Yes, your doctor will have an opinion but it’s your responsibility to understand the alternatives and double-check the doctor’s choice.

At first we vacillated between wanting to know everything or nothing. This passed quickly and we soon thirsted for every scrap of information.

When the doctor explained what Hal had and what probably would be done, we clung desperately to every word he uttered without crediting ourselves with the ability to get some facts on our own. Don’t bet your life on the opinion of one person; you must agree with what is being done. Since you’re all in this together, double-check the facts.

If your anxiety is compounded by memories of movies of a doctor solemnly saying, “There’s no time to lose,” Keep in mind that the unspoken part of that sentence is, “Unless it’s Friday,” when we all know that business everywhere, including hospitals grinds to a halt until Monday morning. Even wackier rules apply during summer vacation season, so give yourself time. Take a deep breath and marshal your questions.

When we were at this stage, computers weren’t the force they are now, there was no Internet and I had to rely on library research. It took longer but I found what I needed.

continued in chapter 5; part 2

chapter 4: part 5

2007-07-13T12:50:00.000-07:00

continued from chapter 4: part 4

We had people viewing the place on Christmas Eve and Boxing Day and finally we sold our lovely old house on New Years Eve, for a mid-March closing. We had had enough sense not to make any conditional offers on another house until ours was safely sold and then we scoured the neighborhoods we had previously scouted and quickly bought a small house for slightly more than we had agreed to pay, but it was a good compromise. We found three bedrooms, workshop space and a fine fireplace in the family room, and we promised ourselves we would set to work to pack soon.

Do I have any regrets about this early re-shaping of our lives after cancer entered into it? Only one. We had talked about trips we would still like to take. We had traveled in various parts of Europe, but we still had to see Venice or take the Orient Express to Paris or drive through England and Scotland.

Hal had often talked of spending a week or so in New Orleans. He was a jazz buff and this was a long time dream of his. We never made it. At first when he recovered and felt fine, his workload was constant and by the time he began to feel ill, it was just too late to try it. It’s too bad we didn’t just take off as soon as he felt well after the first surgery. We thought we had time and we were wrong. We also thought that since we didn’t know how long he could work, or would want to work, we should shore up our savings. The hell with the expense; he would have loved New Orleans.

Writers generally love their work, and they have to, because there must be easier ways to find job satisfaction. Sadly, many people feel trapped in their jobs and there isn’t much they could do about it, with mortgages and orthodontists expenses to juggle.

Members of our support groups didn’t make any radical job changes, and chances are this may not be a good time to dump yours, but dealing with it may be easier when you know that you have a much larger job on your hands, staying alive and well. I promise you that your attitude about your job can change; you may not be so concerned about who gets the promotions. Just be glad you have a salary to carry you and appreciate the co-workers who genuinely care about you and your health. Another bonus us the fact that you can concentrate your attention on your work and the people you work with. It takes you outside yourself.

There is one exercise that comes up often in any sort of group situation and it’s worth repeating here for you to try. If you don’t take the time to sit down and do this, you’re cheating yourself out of something important.

Sit in a comfortable chair in a peaceful room and settle in for some quiet thought. Place a notepad and pen close by. If you can’t blank out distractions like fighting children or a loudly clicking clock, then incorporate them into your contemplation.
Here we go. Suppose you have just learned through divine intervention that today is the last day of your life. You feel well; you have plenty of money and no big worries or pressing obligations. What do you want to do with this day? Waste this day and what do you have left? Set yourself a time limit for this; take too much time and you’ll get bogged down with the hang-ups that prevented you from taking these positive steps in the first place.

Keep to your time limit but make sure your decisions are satisfying. I said satisfying, though not necessarily practical. It’s your dream. Write it in point form. Now we move on.
Next, you‘ve received news that you have one week to live. What are you going to do with that week? Next, stretch your lifetime to one month and write down your decisions. You’ve got the hang of it by now.
Check over your point form notes. Do you see a pattern emerging? You might be surprised how little you would change, or have you opted for massive change? Don’t leave things any longer. When you do get around to dying, you don’t want to review your life and find yourself full of regret for the things you didn’t do well, or just plain didn’t do. This can be done no matter what outside distractions are present. In the process you’ll improve your ability to concentrate.
This isn’t a frivolous exercise; it will tell you a lot about yourself.

Don’t let another day go by with lingering regrets for something you can fix. Make your life count. If your quiet exercises push some excess baggage to the forefront deal with it and get it out of the way. You can’t be one hundred percent about your life because it’s like a tapestry that’s never entirely finished. Just tidy up those loose ends.

This is the beginning of your new life plan.

continued in chapter 5: part 1

chapter 4: part 4

2007-07-11T07:26:00.000-07:00

continued from chapter 4: part 3
We weren’t working out our new life-style in a vacuum. We worked it around the need to carry on daily work schedules, domestic tasks and the round of visitors we suddenly began having. The stream was fairly constant. Cherished sons and daughters-in law and grandchildren came from across the country. We loved seeing them but we missed and needed the quiet we had gotten used to. It’s hard to question the meaning of life when a soggy little kid crawls into bed with you demanding a story about Mister Wiggles, whoever that is.

When we were along together we kept up the comfortable old habits. We set aside time on Saturday mornings to buy grocery items at the Farmers Market and to buy the small household things jotted down on the master list during the week. We’d drop into the local auction rooms to place a reserve bid on something of interest. I mention these simple things because now they are my fond memories of a time when life was “normal.”

A new life plan was taking shape just the same. Our focus was firmly fixed on Hal’s health and the invisible cancer. We had joined a new, dynamic evening self help group with trained leaders, again through the Cancer society. The format of this one allowed people a chance to talk about their illnesses and fears and what they needed and wanted. To my relief there was a group devoted entirely to care givers and about this point because of the strain, you would have been hard-pressed to identify the caregiver from the cancer patient.

We watched helplessly while a young man and his wife anguished over the need for a bone marrow transplant for him and the fact that his chances of getting one in time to help were negligible and a divorced woman who had never been able to bring herself to tell her teen-age son that her two hospital stays were for mastectomies.

We loved one another, enjoyed our friends and our work and gave ourselves quiet time to think and contemplate. We slowly discarded any thoughts, acquaintances and actions that no longer suited our present thinking. We wanted to talk about living and loving and we naturally gravitated to frank, open people who could handle talk of life and death without problems. We shared this illness with the children and we stayed close to one another.

At the end of summer, Hal was finally ready to put the house on the market. We had to cope with strangers tramping through and weekend open houses and remembering to heat the pot pourri to mask the smell of cauliflower. It got to be a habit to whisk a cloth around the bathroom basins repeatedly and make sure the toilet lids were down, that all dirty dishes were hidden away in the dishwasher the instant a meal was finished and I found that the unwashed pots could be tucked away under the snow on the back porch in the case of a last-minute viewing.

continued in chapter 4: part 5

chapter 4: part 3

2007-07-10T03:46:00.001-07:00

continued from Chapter 4: part 2

Once we got that, " where-will-Pat-live?" madness out of our systems, our minds switched back to normal and we became more thoughtful and reasonable and eased up on the intensity of our daily lives. We learned we could value each day without going into dramatic overdrive.

We continued to say I love you, although not twenty times a day. And our kisses were more spontaneous and tender rather than acts of desperation. Slowly the good even tempo of our lives returned and we did what we had been doing anyway. We appreciated and loved one another.

We tried to keep the frightening thoughts locked inside, but the “cottage on the lake” caper released some of the strain. We recognized that our lives were changing and we were not completely in control, or at least our future together wasn’t.

We talked and thought and talked some more and slowly our needs were taking some form. It meant making choices, adding some important new flavors to our lives and discarding the stale.

It also meant in our case, loving one another unconditionally. We thought we had been doing that all along but we hadn’t really learned. Giving up that tired old marriage game, having the last word, was an example of that.

It also meant making sure there wasn’t any loose baggage to sort through with the children. No one gets through their children’s adolescence without some sort of unfinished business, and Hal made time to encourage the kids to close the gap if they had some lingering unfinished business.

Slowly we gained more control over our feelings and the initial shock subsided. We were able to sort things out each day so that there was never a major obstacle kept on the back burner to work through at a later time. We knew we had got through another day without physical pain or symptoms and we valued the chance to keep everything up to date.

We were relived that our conscious confrontation with mortality hadn’t left us opting for selling everything of value to take a world cruise, or roaming the countryside searching for Ashrams or faith healers or “miracle” clinics. It was almost a pleasant surprise to find that we weren’t about to change that much.

We were anchored to our reality and to one another and the flotsam in our lives was being quietly and simply cast aside. One positive outcome of getting a proverbial kick in the teeth is that you value the same life that you took for granted a while ago. We also had something else we had taken for granted in the past-we recognized we had been given the gift of time to tidy up any loose ends, whether either of us lived one month more or a complete life span.

We questioned how to “fight” this invisible enemy, which literally remained concealed and formless for months after the operation. We were constantly aware that this thing was still inside Hal’s body, but it was giving us some breathing time. Hal felt so well he couldn’t really believe he was carrying as ticking time bomb around inside him.

That little voice helped me when I let it. I believe in quiet contemplation to keep my life centered, but I was casual and undisciplined about how often this would happen. I began to set aside some time most days to sit quietly, keeping my thoughts stilled, to let my inner feelings come forward. This was a time of learning and I needed to keep my mind receptive to absorb as much as I could.

Everything I read and heard told me that a positive attitude can benefit the immune system. Adherents of self- help and positive thinking insist that everything to do with cancer hinges around the immune system and the job is to keep it humming.
continued in chapter 4: part 4

chapter 4: part 2

2007-07-09T12:42:00.000-07:00

continued from chapter 4: part 1
Yes, we were doing a lot of the “right” things; we went to cancer self-help group meetings, shared experiences and listened to many stories with happy endings. We updated our wills and cleaned up estate matters. On the surface we were behaving like responsible, coping people handling a tough period in our lives.

We’re still talking about a short period here, before Hal's first visit with the Oncologist.

Then craziness popped into our discussions that began out of nowhere, and could have been titled, “Where will Pat live and what will she do if Hal dies sooner rather than later?” It is a valid question but I was displaying that chronic inner dilemma: “ I’m helpless: how can I manage on my own?”

This question was worth a passing moment or more to think out but we carried it to extremes. We were living with the possibility that Hal might die of this cancer and there was some logic to what we were doing, but we could have just talked about it and made sure there was a general plan. We took it further. We corralled all the nearby children and we all set to work looking for a place for me to live, “afterward.”

I had been born in Vancouver and although I was now a firmly committed easterner, I never stopped missing the ocean. That became the project; find a small place at the edge of the water for the future widow lady. We lived in Toronto, located on the shores of disagreeably polluted Lake Ontario. I was surprised to learn that there actually were places on the lake still for sale despite the foolishness of swimming, fishing or even sitting too close.

The children branched out and took Sunday drives and so did we, away from the city center. We looked at all kinds of cottages, some winterized and some not. We glumly studied shacks with wood-burning stoves or space heaters, places with chemical toilets, land that squished under our feet from non-functioning septic tanks. They all had one thing in common. They were shacks and somehow it seemed right to me that I should live in shabby surroundings since throwing oneself on a funeral pyre was out of favor in Canada.

We should have taken a cue from the fact that every time we set out on a search the skies turned leaden; never a hint of sun or blue sky. Eventually some sort of reason returned to us and we all finally agreed we shouldn’t make any sudden decisions. Besides, I owned too much stuff to fit into a small cottage and Hal was feeling too fit to toss in the towel. There was also a niggling thought in my head that this assignment wasn’t really about getting on with life.

The kids were relieved to return to spending their weekends as they pleased and we returned to a less frenzied pace.

continued in Chapter 4: part 3

chapter 4: part 1 Planning your Life

2007-07-06T07:00:00.000-07:00

continued from chapter 3: part 6

We felt enormous relief once we squared away our business affairs and without realizing it, we had closed the last loophole that permitted any backward looks.
The next question seemed to be--what do we do with the rest of our lives? The reality was that we didn’t just sit down and efficiently plan out what we’d do. We didn’t have any astounding revelations: sell everything and take a trip to the Rain Forest. Whip off to Mexico and have a shot at the peach pit “cures.” Sail around the world. Was there something we really ought to try?

I asked new friends in the support groups what changes cancer had made in their lives. Almost all returned to their usual habits although we agreed we sensed subtle changes in our attitudes about day-to-day living. We were much more aware of everything happening around us and valued each day.

One support group couple, Evan and Rachael had booked a cruise with friends before he was diagnosed; Evan insisted on following through after his colostomy and bladder removal, and they had a wonderful time. They were one of the few couples that continued to take trips, although they sometimes had to seek out treatment for a temporary medical problem.

Another support group friend, Matthew took the boldest step; he was running a successful business but when bladder cancer hit him in his mid-thirties, he found that he no longer wanted to eat and breathe company matters and sold out to begin a less stressful part of his life. When I last saw them he and Norma were trying to decide whether or not to have a child despite the uncertainty of their future. No one has a guarantee in life, but they were reminded of that more forcibly than most people.

We tried to settle back into our previous relaxed lifestyle, but now we were acutely conscious of time passing. It’s as though layer after layer of veils had parted before our eyes and we no longer saw time in measured blocks that we took for granted. Now we felt a need to live each moment, to “get on with life.” That sounds fine but what the hell does it mean, anyway?

We were happily married, we lived a quiet, home-loving life but nagging away at us was the thought that we should be making more of an impact on our world. We were sorting out ways to make our lives more meaningful, just as though we had never done that in the past. That really was the point but we thrashed and floundered about before we realized we really did have it all.

And so began our crazy period.

to be continued in chapter 4: part2

chapter 3; part 6

2007-07-05T06:50:00.000-07:00

continued from Chapter 3: part 5

While we have mortality on our minds, you might want to check into the writing of a living will. Simply put, you want to die with dignity and pain- free, if you must die at all. This won’t have a lot of meaning if you’ve never had a serious brush with death or illness and you haven’t seen it happen to those around you.
Get a book from the library or send for a Living Will Kit (I got mine from a university). It’s really a case of finding out what the medical profession is obliged to do and what your rights are.

One point is how you want it handled if you go into heart failure or need resuscitation.

I heard of one terminally ill woman who was adamant about meeting death on her terms, without a network of tubes and wires sticking out of her. To make sure there wouldn’t be a misunderstanding, she taped her living will over her hospital bed for everyone to see. The staff might be perfectly willing to do it your way but there is a danger that your wishes will be buried in your steadily growing medical file at a time when you’re not able to talk about it.

Now, let’s plan your funeral. Hey, why not? Who is a better judge of the way you want your send-off arranged. If you belong to a church, go visit the minister and talk about it. Then write it down and put the information in a file with your will and the other papers you are slowly accumulating.
I was never one to put things off until the last minute, so we had joined the Memorial Society years ago even though we felt uncomfortable making plans when we were still in our thirties.
When the time came to activate the plans, I didn’t have to change a thing. Do you want a service of some kind? A funeral plot or cremation? Where should the ashes go? How much should a funeral cost? Is there money set aside for this?

And what about savings? Once the first shock wears off, you will be thinking constantly about what will happen if the bread winner can’t work, and there isn’t any money coming in. I can only tell my own tale here. We did seek out advice from various sources and then we shook it all down and made some decisions.
We had very little in savings, but our house was paid for and Hal continued to take some writing assignments.

Now we’ve reached consolidation time. You’ve got all your affairs up to date and you’re satisfied you’ve done the basics. Now where will you keep this information? Your lawyer will have a copy of your wills and power of attorney documents but there are other papers such as insurance information, funeral arrangements, all those things.

Sit down at a computer or a typewriter if you’re a little behind the times and write down the number of every bank account, insurance policy, investments, everything. You will now have a record on the computer but also print it or photocopy it and put the information in one place and tell people where that is. It wouldn’t hurt to make copies of everything and give the sealed file to a friend or relative.

Once this is done and you update when necessary, you are free of niggling worries and you can concentrate on the business of living.

continued in chapter 4: part 1

chapter 3: part 5

2007-07-03T04:20:00.000-07:00

continued from Chapter 3: part 4

Who pays the bills in your house? Both partners should be competent in this department, although it’s mistake to try to do it together. You need to know how the insurance and mortgage payments are handled and have a rough idea on how you spend your money. We had taken turns with this over the years so this wasn’t a hard one.

Hal was a free-lancer, an occupation that is much more prevalent now than it was then. We had paid for years on private disability insurance, which would pay out one thousand dollars a month beginning sixty days after diagnosis or after the disability was reported, and the claimant was unable to work for a period of time. He insisted on working when he could so we didn’t apply for this until the last few months of his illness.

Before that, we lived on savings and revenue from occasional assignment Hal took on when he felt well.

For those working in permanent jobs, a trip to the Human Resources is in order, to have a frank and personal discussion with someone there, to find out what options are open to you. Take notes and if something is unclear later, go back and check, anything to keep your anxiety level down.

Now is a good time to burn the diaries. By this, I mean go through your personal papers and possessions and decide just what you wouldn’t want anyone to find after your death. If you saved love letters or other correspondence you’re rather didn’t go into other hands, consign them to the fireplace or shredder.

On the other side of this, you might consider writing letters to the people you love, to be given to them in the event you die sooner than later. I wish Hal had done this. I knew how he felt about the kids and me but it would have been something tangible from him. It’s hard for a professional writer to simply write a personal letter. I have to admit that to this day, I haven’t tucked away personal letters to the people I love.

It’s also a good time to forgive your enemies. We didn’t have any known enemies but we had friends with ongoing family feuds, now is a good time to get it settled. Your adversary may need some time to recognize that you are a different person from the one who was carrying on the feud, so allow some latitude. The more serenity you can muster in your life, the better off you and your immune system will be. Get the emotional decks cleared.
continued in chapter 3; part 6

chapter 3: part 4

2007-07-02T07:05:00.000-07:00

continued from Chapter 3: part 3

When the time came, the closing of Hal’s estate would be pretty straightforward, but there are prescribed steps to follow. The lawyer and I were Hal’s executors. During my first visit with Alan after Hal’s death, I carefully rounded up any documents I thought he might need and a second visit wasn’t needed.

In retrospect, I can say unequivocally that a woman is doing herself a disservice is she turns all the estate matters over to others. This is the time to muster all the self confidence you can.

Do you have a safety deposit box? What’s in it? Our box contained our wedding certificate, some insurance papers, old coins and pictures and some furniture and jewelry appraisals, in case of theft. When a partner dies, the box contents must be formally listed in the presence of a bank representative and then the box would be sealed until probate was completed. We closed out the box and put our far from valuable items in a fireproof box, at home.

We analyzed our life style and looked at ways to pare down for financial and physical reasons. I had quit my job a couple of years back to remain at home and consciously made the decision not to return to work but to look after Hal and worry about the consequences later. A lot of people don’t have the choice and I am grateful that I did. We were content to stay put most of the time, we didn’t own a cottage and we drove a cheap, serviceable car. We loved restaurant dining and switched from dinners to lunches, to pare down costs. We loved going to a few auction sales and switched to tendering reserve bids for items at a price we could afford instead of getting caught up in the heat of the bidding.

A major expense was the upkeep of our beloved home, a century house in regular need of repairs and we hadn’t even reached the stage where we could decorate instead of general maintenance.

On the physical side, our cleaning lady had moved on and I was trying to keep up with the cleaning of ten plus rooms and knew I would need a lot of stamina to care for Hal if his illness progressed.

I knew with a sick certainty that aside from a small life insurance policy, we had few assets except that we owned the house outright and the market was appreciating.

I broached the idea of moving to smaller (and cheaper) quarters and Hal was uncomfortable with the idea, so we left it for a while.

We had that awful investment loan that weighed heavily on me. Before his illness Hal was concerned that we hadn't saved more for retirement and he looked for ways to shore up our assets. We were so gullible that, taking the advice of the accountant soon-to-be-realtor, We took out a one hundred thousand dollar loan against our house and began investing through a hedge trader, exactly two days before Black Monday when the country sank into recession. It seemed wrong to me to get into this but I didn't have the confidence to fight it.

Hal could never bring himself to give up completely on these stocks that were failing and we were paying a thousand dollars a month in interest payments. This was the first item of business I handled after Hal died; the hedge trader was sent packing and I liquidated, with a huge sigh of relief.

Since we were both out of our league when dealing with financial matters, Hal wanted professional advice about ways to stay afloat if he was unable to work and find out just what his net worth was.

First, we visited the accountant, the one who soon after gave up his profession to take on real estate and continued visiting the racetrack. We had known him for a few years but he was never able to get it out of his head that I was formerly a schoolteacher and he thought I should return to my old teaching job. I had been a commercial artist and a Human Resources specialist. He also suggested that, if I were on my own, I could rent out the house. “And then what?” I asked. He had no idea.

We hired a professional adviser and spent time with her setting out our entire financial picture. She solemnly absorbed this and went away to write out a financial plan. I came across this much later and was amazed at how much information she lacked about her own profession.

The good part of this expensive exercise was that we finally clarified our thoughts about our possessions, assets and options.
to be continued in Chapter 3: part 5

chapter 3: part 3

2007-06-29T06:35:00.000-07:00

continued from Chapter 3: part 2

Along with the abrupt change in our lives, I came to realize what a passive person I was. Opinionated but truly passive.
I had been raised in a completely father- dominated household where a woman’s views were not to be taken seriously and certainly not worthy of respect. I dragged along this attitude into marriage despite having a husband who believed in total equality.

In the past although we took turns with the household accounts, I was satisfied to leave any other business decisions to Hal when he would have been happy to turn them over to me. Business decision-making was of the few things he wasn’t good at and out of necessity around this time I took more and more responsibility and eventually I was pretty good at it.

These questions were no longer items just for Hal's consideration; is the house in both our names? Is the car? Is the cottage? Okay we didn't have one but if we did--
Alan reminded us that you can get tangled in estate problems if you don’t carefully examine the pros and cons of your particular situation

We had one joint checking account for bill paying, but then we branched out into “his” and “hers” Christmas accounts, “rainy day” funds and heaven knows what else. Despite the fact that we had made each other our beneficiaries, Alan advised us to condense our personal bank accounts and make them joint accounts so that the survivor would be the sole owner without legal intervention.

We took his advice with the tacit understanding that we would leave one another’s accounts alone. The exception was an account that Hal maintained for gifts for me and he wanted his name only on this one. Closing out this account after his death caused me uncountable pain. I had to take to his bank a notarized copy of his will, his death certificate and his bankbook. I’m not that private a person but handing these things over to a stranger was terrible. The bank clerk stood in front of me and read the will from cover to cover, despite the fact that I was named sole beneficiary at the top of page one.

to be continued in chapter 3: part 4

chapter 3: part 2

2007-06-28T03:48:00.000-07:00

continued from chapter 3: part 1

Our accountant loved playing the horses and hadn't much energy for his job in a respectable accounting firm; eventually he departed hastily and quietly.
Hal was intrigued by quirky characters and he thought this man was okay despite some questionable business advice in the past.

This same fellow had referred a lawyer to us and so what did we expect? This lawyer didn’t work from an office when we first knew him and he handily rode the subway to our house when we needed to see him. We did think this was a tad unusual but we never investigated his past. Eventually he rented a corner in a large legal firm but that didn’t make him any more successful.

This man failed us miserably when we needed his skills. We had one meeting with him, told him what had been happening to Hal and asked him to put the wills together quickly. He never completed the task. We took turns phoning him every few days and he always replied they would be ready “next week” and he would call us but he never did. Finally, I sent him a letter literally firing him and he responded by billing us for three hundred dollars,” for financial advice”.
You will get an idea of our mind states when I tell you I paid the bill, although I had the satisfaction of telling him what a sorry specimen he was.

Quirky characters were beginning to lose their appeal and Hal remembered a lawyer he had met through a writing assignment and called him. Alan remembered Hal and made an immediate appointment when he learned the reason. Hal was frank about his cancer and his prognosis and Alan thoroughly covered what the law requires and went over everything we might need to know.

While we were at it, we made a separate memorandum to be attached to our wills telling the children how we wanted our personal possessions disposed of after our deaths. We took a hard-nosed approach here. When it came to leaving things to the kids and their mates, we couldn’t assume each marriage would remain intact, but the kids were ours forever, so we simplified by dividing everything up between the kids and omitted specific bequests to mates and offspring.

I asked Alan what would happen if Hal were to be physically or mentally incapacitated during his illness or anytime for that matter. Would I have the authority to make business decisions for him or even sell the house if we needed cash to make him more comfortable? Alan suggested that power of attorney was a good vehicle. This document assigns complete power of your personal and business affairs.

He also said, “Pat, what makes you think you’re exempt from running into health problems? Both you and Hal should assign one another power of attorney. You sign these forms and leave them with me and if they’re ever needed, there won’t be a delay of many months while the province sorts it out.”

To be continued in chapter 3: part 3

chapter 3: part 1. "I Should Do What?"

2007-06-27T06:30:00.000-07:00

continued from Chapter 2: part 5
The practical side of me kicked in about this time and I was thinking a lot about how Hal’s death would impact on our lives. We will all get around to dying and when we do, we will leave this planet stark naked, no baggage allowed but we can plan for what we leave behind.

A life-threatening illness is a good motivating force. Your mind turns again and again to the implications of dying; it’s like poking your tongue into a new cavity. Have we got enough money? Can we afford our present life style? The questions run round and round, and common sense dictates that you get these questions settled quickly in order to get on with the business of life.

In the early days of his illness, Hal and I talked in a detached way about the possibility of his dying. It was as though we were speaking of something that might happen to a stranger, but we knew no matter how fuzzy our thinking, that we had business to get out of the way.

I’m a list maker. We sat down together to discuss these worries and this is the list we drew up for Hal:

v Write personal letters to family members or do an audio tape. ( never done)
v Write own obit. ( never done)
v Order lumber to rebuild sagging back porch. (ever practical).
v Call Lawyer to discuss updating will and ask whether Pat needs power of attorney for future.
v Call Real Estate friends about appraising house for possibility of selling.

Nowhere does it say, what are our assets? Are we okay?

We began by getting our wills in order. You can buy a will kit at a stationary store and do your own or blow the hundred bucks or go see a qualified lawyer, once who specializes in estates. You may think you haven’t enough worldly goods to bother, but remember, someone has to distribute your things, and why not have it done your way?

We made an appointment with the lawyer who handled Hal’s one-person company. Our existing wills were done years before when the children were still dependents and a lot of tidying up was due. This should have been a simple assignment but it turned out to be a nightmare.

To be continued in chapter 3: part 2

Chapter 2: part 5

2007-06-26T06:24:00.000-07:00

continued from chapter 2: part 4
Hal’s good friend Bob gave us another welcome push. He sent Hal a copy of the book, “My God, I Thought You Died,” written by Claude Dosdall, a man who was diagnosed as terminally ill with brain tumors several years ago and lived to start a support system that endures today. We devoured the book and were amazed over Claude’s search to prolong his life. He tried diet, expensive self-healing groups in the U.S., Philippine “miracle” cures, everything. We were learning there were many ways to fight the disease and there were many people out there who found the right way for them and were joyously alive.

Along with these discoveries and the refocusing of our interests something special happened within our marriage. We were a verbal couple who talked and talked our way through any difficulties, which led some friends to call us the Bickersons, after the couple Frances Langford and Don Ameche made popular on radio many years ago. This couple didn’t listen to one another but waited for a break in the conversation to jump in and tell their side. We were both adept at snapping off brilliant one-liner rejoinders that may have honed our entertainment skills but did nothing to improve our ability to listen to one another.
One day, post-surgery, Hal launched into one of those dialogues and I realized I wasn’t going to play anymore. I loved this man and I listened carefully to what he said because I wanted our time together to be precious and good. Farewell old worn-out game. Hal realized soon enough that I wasn’t playing so he hung up his verbal sparring gloves too.

During some darker moments when I was working in my study, I wondered what life might be like living alone, and swore to myself that if Hal died first, I wouldn’t make a saint out of him in my memory, so the next time we had a dispute, a minor thing but something that used to drive me nuts, I wrote myself a note about this irritating habit and tucked the note into the pocket of a jacket I don’t wear too often. It’s not a bad idea to remember some of the irritating habits when you’re alone and feeling sorry for yourself.

Childish? Sure, but it helps.

We said, “I love you,” a lot. Hal was always a romantic and since the beginning of our marriage, we’ve had candlelight dinners, first with the kids and later when we were back on our own. He never failed to thank me for preparing a meal and often sent me flowers for no reason; now we continued to appreciate one another more consciously. I had a habit of tucking a love letter under his pillow if I was going to be away overnight or longer and he saved them all, I discovered later.

Something we didn’t expect and it happens, is that once the incision healed, Hal felt fine and continued that way for some time. He felt and acted like a well man and it would have been easy to forget that this disease was buried deep inside him, and he certainly had retreated deeply into denial.

I was confused; perhaps the gloomy cancer movies were not entirely accurate. How was it possible that this man with cancer in his liver and colon could be feeling so well and energetic? Had the tumors disappeared? Had he cured himself?

Our focus was on the cancer but it was easy to forget for chunks of time that our lives weren’t the same as before. Hal felt well, he had his old energy back and had resumed his workload.

We were being given the gift of time to re-evaluate our lives and the way we spent our time, and unconsciously we were using this gift to shore up for what might be ahead of us.

to be continued in chapter 3: part 1

chapter 2: part 4

2007-06-25T07:10:00.000-07:00

cntinued from part 3

Phoning the Cancer society was a good start. I called the office nearest our house and explained Hal’s condition to the kind voice on the phone and told of my worries, that we were new at this and that we needed to talk to other people in this predicament. What resources were available to us? The woman on the line described various support groups including the one nearest to us, and promised to mail all the information we needed to get started.

"There now," said the inner voice, " You’re beginning to take charge."

A big envelope stuffed full of pamphlets arrived two days later. I felt such relief that someone had responded to my need. I studied everything. There were casual drop-ins, formal paid self-help classes, one-on-one buddy services. Hal was curiously content to leave the sorting-out to me and agreed that he would follow any course I thought was right. He focused on the thought that if he returned to work then he would remain well. Unspoken was the understanding that he would work at staying well and I would do any fighting necessary to help keep him there.

This was the beginning of our new team effort. After sifting through the pamphlets and consulting Hal with a synopsis of what I’d read, I arranged for us to join a casual Wednesday afternoon drop-in group of cancer patients who met to encourage one another. They had an informal staff leader and it was very low key. It turned out to be an excellent place to start the journey back.

We got a kick out of walking the several city blocks to the meeting on the twelfth floor of an office building. That simple act gave us a feeling of control. We were directed into a large sunny room with about nine people there; we were greeted by everyone and invited to have refreshments. Punctually, the leader brought the group to order and the format was: each person introduces himself, tells a little about his cancer and what he’s doing with his life, and so on. Not one person in the room looked sick. I was the only caregiver in the room that day. That’s what we’re called, caregivers. It was made clear that I was there to support and if I needed support myself, then find another group. I was there for Hal. Period.

Some members had been in remission for months, even years, but kept returning to give and gain strength from the group. We met James, a man in his mid-thirties who had the upper lobe of his left lung removed five years back and was told then that his time was limited. He lost his fiancée over this, but he feels good and he’s alive with continued positive results from his periodic check ups.
There was Sylvia, a woman in her late sixties, who was the only survivor in the world of her particular type of cancer, diagnosed seven years previously. She made her living writing crossword puzzles and children’s’ books and the morning after her surgery, she claims she sat on the edge of the bed and worked steadily on her latest book. The doctors came in to tell her the grave news. She positively twinkled when she continued, “Nonsense, I’m too busy finishing my book.” No matter what happens, she could die tomorrow and chances are it would be of old age. I got the impression that being feisty is an asset.

When Hal described his condition, several people murmured, “Mary. You’ve got to talk to Mary.” She was one of the members, not present that day, who also had secondary cancer of the liver. That is something that’s hard to earn at first; the original site is the main cancer and forever takes precedence, and anything after that is the secondary site. Thus, Hal had colon cancer.

We learned of the anger people can show to cancer patients. One man said his next-door neighbor of many years at the cottage turned hostile when she learned of his cancer and slammed into her cottage whenever he came into view.
At the other extreme, one member refused to tell anyone and swore his wife to secrecy. He claimed he wanted this privacy and yet he came to the group to talk. Actually he sat there and mostly listened, except to complain, “No one would understand.” I wondered then and wonder now whether some of the complaints were a way of displaying anger at being the “victim” of a disease. Perhaps this causes shame.

The wonderful grapevine did its work and that night, Mary called Hal. They had a long talk and she told him about the less traditional treatment she had opted for and explained it in detail. She said she was free of the disease at present, two years later. Hal felt good after the talk but was prepared to hold off any decision making about treatment until he heard what the cancer specialist had to say.
He remained content to have me find approaches to handle his recovery; he would continue to concentrate on his job assignments.
to be continued in chapter 2: part 5

Chapter 2: part 3

2007-06-21T16:09:00.000-07:00

continued from chapter 2; part 2

Cancer. The fear of the disease is one kind of burden, but actually dealing with it is another. How many times have I heard friends say they would never allow a doctor to “butcher” them to remove the tumor? Or, they’d rather die then suffer the indignity of a colostomy? Funny thing, if the unthinkable becomes reality, the desire to live longer overshadow those bold statement made from a position of good health.

We spent a few days using the “C”word until it was no longer a stranger. This was a necessary first step to get out of the way before preparing our battle plans. Try battling an unknown, unseen enemy. It takes strategy, imagination and information. But we knew its name.

There were subtle differences in our lives now, though. We stopped rehashing the past months of not knowing what was wrong with him and Hal took job assignments once more. We took long and longer walks to build his strength and he began having pre-dinner drinks again. I was fearful of what this was doing to his already beleaguered liver, but kept this fear to myself.

Already I was noticing that Hal changed the tone of the doctor’s remarks so that a stranger would believe Hal had just had routine appendectomy. He convinced himself the doctor had changed his mind about his “less than 40% chances.”
I wasn’t about to burst his bubble, but besides that huge denial there was, buried just beneath the surface of my mind a nagging worry. What are we supposed to do now? What is the cancer doing to him? Why didn’t anyone tell us what to do next? How could the surgeon simply release him without seeing that he was monitored daily or weekly? Should he be?

On one of those back-to-normal mornings as we sat together at breakfast, the permanent lump in my throat threatened to strangle me or at the least, embarrass me into bursting into tears, I felt so helpless. I took a deep shaky breath.
“Shouldn’t we be doing something?”

“Yeah, I think we should.”

He knew what I meant. We weren’t seeing a cancer specialist, at least until our in-the-future appointment was arranged; we had no idea how fast the cancer cells in the liver were growing. I woke up and went to bed with a feeling of panic and can only wonder what was behind Hal’s calm façade. The children were calling and expressed joy that Hal was bouncing back but still, I kept imagining those pervading cells invading deeper and deeper into his body. We needed some guidance.

“We’ll be seeing the surgeon next week; what’s wrong with waiting for him to tell us what’s next?”
“No, I just know we have to start helping ourselves.”
My inner voice kicked in.
“I’m going to phone the Cancer society and ask for some advice. At least that’s a start.”

to be continued in chapter 2; part 4

Chapter 2: Part 2

2007-06-21T03:47:00.000-07:00

continued from chapter 2; part1

At first we behaved like two people out of a heart-wrenching drama.
We said, “I love you,” twenty times a day and if one us took a trip to the corner store, the farewells were bloody dramatic. You can’t keep this up—you’ll wear yourselves out with raw emotion.

We were kind to one another. We automatically gravitated away from negative people although there were few of those. We were automatically taking those first steps without being aware.

Our first objective was for Hal to gain weight and to heal the nine-inch incision. He had a worrisome setback when he developed a knotted pain behind his right shoulder blade, but it eased with the help of Tylenol, and we attributed the pain to a muscle spasm. Later we learned this is a side effect of the liver damage.

While Hal was gaining back his strength, we settled back into our old ways. In the past I had often joked to friends that although neither of us was retired, I could write a book on preparation for the event. We both lived and worked in our house, and still managed to have something to say to one another in the evening. We managed this by having our offices on separate floors and conversation occurred only when I came down to the bathroom beside his study or when one us received a phone call with too-good-to-save news. At noon, we stopped for a one-hour lunch on trays in the living room and then we usually watched part of a pre-taped movie on television and saved the conversation for the evening.

Hal’s appetite returned and I made milkshakes with ice cream, milk, fresh fruit, eggs and anything else I thought might put on pounds. When we went out on Saturday errands, he was less protective about his incision, and stopped holding his hands combatively in front of him, like retired fighter who had taken one hit too many.

We fell further back into other old routines. He was the breakfast maker and I was the lunch and dinner maker; we had shared these tasks when I held down a full-time job and we kept the chores when I quit to stay home and write.

Still there was this presence in our house. Hal had recently undergone a shocking trauma, and here we were, tiptoeing into life pretending what happened was behind us forever.

A major obstacle to clear out of the way was to learn to use the word CANCER It was a tough thing to do. It’s not difficult when you’re talking about someone you hardly know, but when it suddenly becomes a personal thing it’s like having to speak civilly to a rude stranger. At the moment this word was commanding our lives. We hadn’t said the word for the first few days after the surgery and then, almost in unison, we said it out loud.
“It’s cancer.”

to be continued in chapter 2: part 3

Chapter two part 1 Okay, Now What?

2007-06-19T09:49:00.000-07:00

Continued from chapter 1, part 12

At last we could go home. Hal's hair was shaggy, he was ghostly pale and his clothes hung from his gaunt frame. He looked wonderful to me and his attitude was upbeat. He behaved the way he would for the remaining year of his life, like a well man with an inconvenient health problem.

He asked for a long-way drive home to see the neighborhood and watch people walking by on the street and he grinned with delight when I found something quite rare, a parking spot in front of our house.

Hephzibah was glad to see him. She was our nineteen-year old part Persian, part Angora cat who was sinking into senility and had it fixed in her mind that our new broadloom was her litter box. After nineteen years, it was hard to discuss “putting her down,” especially when we were now dealing with a life-threatening illness. She and Hal were such good pals that she’d even settle down to wait or him outside the bathroom door.

After the two pals had a good chance to say hello, I took Hal’s hand and led him upstairs where the bed covers were turned back and his pajamas paid out.
He gave me a stony stare.
“I can tell by the look of determination that you have in mind treating me like an invalid,” he muttered, “go find another hobby.”

He headed down the hall to his study to read his mail and I went down stairs to make him a calorie-laden milk shake.

For the first couple of days, we rambled about the house like two marbles in a shoebox, getting in one another’s way and not knowing what to do next. He was protective of his wound and walked about slowly. If it had been like old times, he would have been working at his computer and I would have been on the third floor working on mine.

We were anxious about his future appointment with Dr. Beam, the surgeon, to make sure the wound was continuing to heal and after that Hal was to be turned over to an Oncologist at Princess Margaret, the cancer hospital. We had expected the turnover would have happened before he was discharged from the hospital and we couldn’t understand why everything was so casual. The surgeon had explained to us that the Oncologist was on vacation but still, shouldn’t someone be monitoring a man with cancer in his colon and liver? Why didn’t I telephone and ask? I still don’t know. Traces of that previous passive stance remained. I simply felt a constant nagging worry.

I can be more objective about these times now, and while I question whether our family doctor should have let him suffer so long without the intervention of a specialist, I'm more curious about the passive behavior we exhibited during that time. That simply wasn't our usual style. I don't recall, either, ever allowing myself to think that this condition might be cancer. If one of our children had these symptoms we would have been demanding some immediate answers; somehow we just did not believe this painful episode in our lives was serious. I suspect that a lot of people reading this went through the same experience.

I understand better now the way cancer works; we sought help as soon as Hal felt any symptoms but even then in his case the disease was too far along.
There isn't anyone to blame. Time and again when I talked about this with friends who had gone through this, each recounted tales of misdiagnosis. It simply isn't easy to identify.

We were just beginning to grasp the most important message we were to learn, that it just isn't enough to put your life into the hands of the doctor; you have to take control yourself. At first we had felt helpless, like puppets with an invisible person pulling the strings. We had felt sorrow, and then confusion and anger, and then we felt hope. I know the human mind can win over body symptoms and I know Hal made the rest of his life count because he focused entirely on living.

Those early rules we'd been raised by came into play. You face your obstacles and you clear them out of the way. We set out to do just that.
to be continued in chapter 2; part 2

Chapter 1: Part 12

2007-06-19T06:32:00.000-07:00

continued from part 11
What is it about being a hospital patient? After spending a few hours on a narrow cot your will and identity fade away and you turn into a hospital gown with legs.

We learned there were two important components to Hal's post-surgical recovery; first was the resumption of eating solid foods and the other was the passing of gas. It’s all pretty basic; food in, gas out, nature’s way of signaling that the body is functioning. The blockage was corrected, at least for now, the incision was healing properly and the body gases would once more be passing through instead of backing up and causing pain, as before.

The first couple of days after the surgery, each nurse approaching the bed asked, “Passed any gas yet?” That’s what it’s all about, getting the machinery to function. We added body gas to our daily conversation.

That was the first victory.

Hal took his first solid food with a casual air but it hit me with almost dramatic impact. There had been the usual round of clear broth and gelatin, but finally a tray of identifiable food was brought in. With each mouthful he took I visualized padding returning to his body so that I could no longer count his ribs and vertebrae. That was as far as my mind could travel ahead; just imagining him with his weight restored.

Next on the agenda, nurses carrying scraps of paper and pen would ask brightly, "Had a bee- em today?" It cuts through all that idle chitchat, such as, "How did that missile crisis sort itself out?" Hal was passing his tests extremely well and was beginning to grumble about missing his own bed and his computer, in any order.

Six days after the surgery a resident popped in during breakfast to tell Hal he would be released later that morning. Hal telephone the news to me and I raced around preparing for his homecoming, changing the sheets, laying out fresh pajamas and searching our neglected city garden for fresh flowers. I rushed to the hospital.

Then, we waited. And waited.

“He can’t leave until the release is signed, “ said the nurse.
“So, let’s call the doctor and get is signed.”
“Doctor is in surgery; you’ll have to wait until he is finished.”
“Then, please call one of the residents.”
“Well, I’ll try.”
Silence.

I thought of who might be waiting in an uncomfortable emergency department bed, waiting and waiting to be transferred to a ward. To Hal’s bed.

At five o’clock, nine hours after the news that Hal could leave, the surgical resident was tracked down and came in to talk to us.

“You’re free to leave now, Mr. Tennant. You can resume your normal life and get back to work whenever you feel ready. Soon the surgeon will arrange for you to see an Oncologist, a doctor who specializes in treating tumors.”
“What restrictions are there in his diet?” I asked.
He looked surprised.
“Why, there aren’t any.” Just resume your normal life.”
“Then what about drinking alcohol?” I persisted.
“Well,” long pause. “A drink or two won’t hurt.”
In a damaged liver? This was our first write-off and I wasn’t prepared to face that yet. (The guy is going to die of this so let him do what he wants. The outcome will be the same.) He gave Hal a prescription for Tylenol 3, “ In case of discomfort,” and wished us well.

continued in chapter 2:part 1

Chapter 1: Part 11

2007-06-18T06:30:00.000-07:00

Continued from part 10
On the third morning after the surgery I awoke very early and something crystallized in my consciousness. From the time we learned we were dealing with cancer, I had been hearing that little voice inside telling me that this illness was the most important lesson I would learn in this lifetime and I had a chance to make it a positive and strong time for us both. I was finally listening. We weren't going to quit. I didn't know what was going to happen but we weren't going to wait for someone else to fix this. We had to do something on our own.

I called our son, Scott in Vancouver. It didn't do much for his heart because western time was three hours behind us and he had been fast asleep.

"Cancel those funeral plans; we're going to fight this and we're going to win."

He sighed with relief. "You two have always been the leaders and I've been waiting for you to say something to give us hope." As we talked he began to sound better and promised to pass on the word to his brother Peter, who lived nearby. The Tennants were about to gear up for battle.

Later when I arrived at Hal's room I took his hand and declared,

"Sweetheart, I don't know how we will do this, but we're going to get through this and we're going to win."

He smiled and put a lot of chutzpah into his reply, "There was never any doubt in my mind."

We talked vaguely about how we would go about taming this intruder, absolutely clueless about what was involved. Once I remember interrupting this vein of thought to say,

"Strangely enough, I find the evenings okay without you, but I hurt so much in the mornings."

He looked steadily at me and said, "You've got to try to find a reason to get up every morning."

That was the only time he ever indicated that he might not survive this.
continued in part 12

Chapter 1: part 10.

2007-06-15T06:53:00.000-07:00

Continued from part 9

The next morning as I walked to the hospital, I stared into the faces of everyone I passed. Life was going on, just as though there was a reason, a plan. It was so hard to understand. Are the people on this street really so resilient? I felt so disconnected from them and from life.

They were eating hot dogs, bought from the vendor with the stainless steel cart, some were eating ice cream cones from another vending cart; no one seemed to know that life would never be the same again. Were any of them hurting? They had to be. Could anyone know I was hurting? Perhaps I hid it as well as they did.I felt tears on my face.

Hal looked uncomfortable and groggy. I kissed him and stroked his hair. I asked him if he had seen the doctor that morning and he said he didn't think so.

Then he gave me an intent look and asked, "Did they get it all out?"

I froze. I didn't know what to do; the doctor said he would tell him and I didn't know whether I had the strength to do this. I didn't even think of putting him off.

I said, "Well, there are a few spots on your liver."
He looked at me for a while, then nodded and closed his eyes and seemed to be asleep. I was falling apart inside.

The doctor and his team of residents entered around an hour later. As soon as they approached the bed, Hal opened his eyes and immediately became alert as he watched the doctor pull the curtains around the bed. This doesn't block the sound, you understand, it just gives a false semblance of privacy.

Hal listened carefully as the doctor repeated everything I had told him an hour before, adding that the tumor had been as big as a fist. He winced at the news and slowly I realized that Hal had not remembered my talk with him earlier. So much for Demerol. So much for the ulcer that I was probably growing that minute. The doctor spoke optimistically, pouring out a stream of statistics and the words "forty percent survival rate" were repeated again and again. He said Hal would be able to go home in a week. Go home. I never thought he would leave the building. Should he leave the building? I had no ideas what to expect and neither did Hal.

After the doctors left, Hal slept a while; then he opened his eyes and we silently looked at one another. His eyes looked so remote and so sad. We held hands.

I said, "Do you want to talk about it?"

He shook his head. I felt battered and I knew our world had come unglued; was I going to lose him?

This was the way we behaved for a couple of days; we clung to one another, talked about small household matters and avoided this horror that had invaded our world.

Continued in part 11

Chapter 1; part 9

2007-06-14T16:00:00.000-07:00

continued from part 8

I leaned my forehead against the wall and tried to control the tears that were beginning to form. Melissa and Lorrie joined me in the hall and I told them. We hugged one another and cried softly, then collected Hal's things from the waiting room and left to find his new room and await his return.

The elevator was slower than ever that day so we kept busy walking up and down the nine floors several times getting things organized and waiting for my son Mike to join us.

I had everything arranged in his room, this time a four-person ward when Hal was wheeled in, groaning loudly. Once he was settled in bed, Mike, Melissa and Lorrie joined me at his beside for a few minutes, and then, one by one they raced from the room. They told me later they couldn't stand to see him so distressed. The nurses settled him with another shot of Demerol and when he dropped off to sleep she sent me home assuring me he wouldn't waken until morning.

Back at the house Mike stationed himself at the phone and called the rest of the family to tell them the news. I didn't want to speak to any of them but it was important for me to listen while Mike spoke to them. I think it became more real as I listened to him tell the same story over again. His voice was calm, but I knew how upset he was. The children at the end of the phone greeted the news with a combination of shock and acceptance.

Mike had brought back with us a box of barbecued chicken wings and we sat on the floor around the big coffee table and ate and talked. At the end of the meal, I felt heavy from overeating and discovered I had eaten only one wing. That was an important feeling for me. I knew, for the first time, what it felt like not to want to eat, and this feeling served as a guide later when Hal had no appetite.

We needed to stay close to one another and we floundered around trying to find a focus; we simply didn't know what to expect or what we should be doing. We were mentally shipwrecked. I wondered out loud how long it would take for him to get back on his feet and whether he would ever work again. Death was certainly on our minds.

My thoughts idiotically swung back and forth with questions and probabilities and when I thought about Hal possibly dying I heard myself ask, "Do you realize I might actually go out on a date sometime?"

The girls looked surprised and then startled when I continued. "Are you supposed to sleep with a man now, on the first date?"

They looked at one another and finally Lorrie said gently,
"Well, you have that choice; you don't have to do anything you don't want to."

I was taking on the double burden of projecting ahead to life on my own while also wondering whether I could be strong enough to give Hal everything he would need through this illness.
continued n part 10

Chapter 1: Part 8

2007-06-13T03:10:00.000-07:00

Continued from part 7

Hal hadn't been sedated when I arrived at his room the next morning.

The surgery was scheduled for one hour from then, eleven o'clock. He was calm and loving and didn't show any signs of nervousness. Hal was never good at showing nervousness; he could cry at the sight of a terrible natural disaster on television but couldn't cry for himself.
We both felt relieved to know what the problem was and we firmly believed that this operation would take care of it. The thing is, you simply are incapable of seeing too far ahead when your life is splintering. We've always been lucky; so what's a little cancer? Or to use what was to become Hal's favorite expression, "Cancer shmancer, just so long as you've got your health."

Next came the hospital game called The Big Switch. Once the surgery was done Hal would be be moved from his medical ward to a surgical floor. The nurse instructed us to bundle up all his things and take them with us until the new room was designated. We each carried plastic bags full of the accumulation of three weeks enforced stay, with his clothing draped over our arms.

We found the special waiting room on the operating room floor. People behave in strange ways during a stressful time. Most people in this room sat hunched over their knees, barely speaking. We sat and gossiped and giggled. We were three manic women doing anything to keep from imagining what was happening down the corridor. The volunteer in this room checked a couple of times and reported the operation was progressing satisfactorily and should be finished soon. Finally she announced it was finished and the doctor would be along soon.

Another hour dragged by and the doctor hadn't come. We became very quiet, wondering what might have gone wrong. Finally the volunteer reported that because of several delays, the doctor had been forced to immediately begin the next operation and would be along after that.

At last he stood at the entrance to the room and motioned me into the hall.

"Your husband came through the operation very well. The tumor was in the large intestine, close to the join to the small intestine; it was very large and had become embedded in the intestinal wall."

I breathed a deep sigh. It never for a moment occurred to me to ask the standard question, "Did you get it all?"

There was more.

" Also, I'm afraid there are some spots on the liver." I thought my heart would pound right through my chest.

" I couldn't remove them because they were pretty well separated; if they had been clustered in one lobe, I could have tried to remove the lobe."

He continued on and finally asked me the usual, did I have any questions. I felt as though a permanent, all-enveloping grey cloud had descended over me. My uncle had died of liver cancer and I tried to remember how long he survived. I thought it was about two years.

I said, "No one survives cancer of the liver."

This dear man then did me the biggest of favors and set the tone for the next part of our lives. He looked sternly at me and said,

"Now look, I promised your husband yesterday that I would level with him. He wanted the absolute truth about what I did and what I found. This is not a death sentence. I know of a man who lived another eighteen years with cancer on his liver. Don't write your husband off because of this. You've both got lots of living to do. Now I'll be in first thing in the morning to tell him what we found."

He squeezed my shoulder and left. I wasn't able to take it in just then, but his message would slowly seep into my subconscious over the next few days.

to be continued in part 9

Chapter 1; Part 7

2007-06-11T15:59:00.000-07:00

Continued from part 6

I arrived home from the hospital around five o'clock and the phone rang. It was Doctor Kroll calling from Hal's bedside.

"Mrs. Tennant, I am here with your husband; we have now found the source of the problem. It's a tumour and I'm pretty sure it's malignant."

He paused to give me a minute to register what he had just said.

"The surgeon will remove it tomorrow morning. Are there any questions you would like to ask me?"

All I could manage was, "Will he need a colostomy?"

"No, no, not for this. The surgery will of course be more extensive now that we know what we'll find, but there won't be any need for a colostomy."

After I hung up the phone I stared out the window for a long time. Then I called the children to tell them the news. M'Liss and Lorrie, my daughter-in law would arrange to come to the hospital the next morning to wait with me while the surgery was performed.

Then Hal called. Somehow I thought the doctor would have given him a sedative and in my confusion and grief it hadn't occurred to me to call him.

"Now, don't you worry; I'm going to beat this thing. I love you."

I was emotional and crazed but he was calm and upbeat, as though he already recognized the battle ahead and the need for cool thinking. All through this puzzling time, I had been the solid one, perfectly calm and in control, but now Hal was the rock.

He had met the surgeon, Doctor Beam, earlier that day when they were still planning the more minor procedure. He was a young formal guy with reddish hair and Hal liked him. When he learned that Hal had finally been diagnosed he returned to his bedside to reassure him about the operation and tell him what he would be doing now that he knew what to expect.
Continued in Part 8

chapter 1: part 6

2007-06-11T13:01:00.000-07:00

Continued from part 5

The next day we'd both had enough. Hal had patiently endured days of probing and testing and we now insisted on a medical conference.

We met that afternoon with Dana, Dr. K's medical resident. We pointed out that Hal had been without food for a long time and some sort of decision had to be made. We had read up on Crohn's disease and if this is what we were dealing with, we would learn to live with it. We had to have some answers and we needed to know what the doctors planned to do before Hal lost more weight.

On a practical level, he had clients getting impatient with his inability to finish his assignments.

Dana reported our feelings back to the doctor and he came in to say he had arranged to have a laparotomy performed in two days time. This is a look-see sort of operation, or an exploratory procedure. Since the tests weren't giving a clear picture of the problem, they would resort to this surgical procedure to tell them what the culprit was.

"Oh by the way, " he added, "Did anyone mention the possibility that we might have to do a colostomy?"

My god. There was a time when news like this would have sent us into shock, but if this procedure would put an end to the nightmare, they were welcome to go to it. We'd rather they didn't but life was much more precious now.

In the two days remaining the doctor, frustrated by the lack of significant answers, ordered three more tests prior to the scheduled surgery.

First, Hal was to drink some barium, and the course of its journey would be followed by X- Rays every three hours. The barium couldn't get very far, which seemed to surprise everyone but us, and he soon felt the return of violent pain. Despite his agony, we knew that in three hours a porter would come to fetch him, take him with his intravenous pole in a wheelchair downstairs to Radiology. Then, after the test there was another wait for a porter to be called to return him to his room. The delays were frustrating and I finally persuaded the nurses to let me take him down and back myself, managing the chair and pole with the help of anyone in the elevator. By the second trip down he was groaning so loudly with pain he got top priority and went to the head of the line, just to get him out of there before he agitated the other waiting patients.

After that miserable experience we learned that the test results were inconclusive and that filled me with resentment, but I didn't know then how to cope with a specialist's orders.

Next on the schedule was a C.A.T. scan, which was fine with us, because there wouldn't be any pain involved. When that got underway the technician angrily announced the procedure was useless because of all the barium sitting there with nowhere to go, blocking a view of the site.

There was one final test to try before the scheduled surgery, a Colonoscopy. This is similar to the Endoscopy except that the flexible illuminated tube is threaded from south to north through the rectum and colon. Hal had insisted on a large dose of Valium and was groggy but smiling after the examination.

I sat with him all afternoon but there was no sign of the doctor and I assumed he had taken tissue samples and hadn't heard back from the lab.

Continued in part 7